House of Lords
Thursday, 10 January 2013.
11 am
Prayers—read by the Lord Bishop of Hereford.
Death of a Member: Lord King of West Bromwich
Announcement
11.07 am
The Lord Speaker (Baroness D’Souza): My Lords, I regret to inform the House of the death of Lord King of West Bromwich on 9 January. On behalf of the House, I extend our condolences to the noble Lord’s family and friends.
World Food Supplies
Question
11.08 am
To ask Her Majesty’s Government what importance they attach to the consequences of large-scale commercial land acquisitions in the developing world in their policies relating to the developing world and the prevention of a world food crisis.
Baroness Northover: My Lords, the UK Government are committed to improving food security and nutrition in the developing world. We believe that private sector investment in agriculture is important in achieving that. We are clear that those investments, particularly any that involve commercial land acquisition, must be socially and environmentally responsible.
Lord Judd: Does the Minister agree with the estimate that, on average, every six days, investors buy an area of land the size of London in the poorest countries, which are often already facing acute food shortages? Do not those investors too frequently intend to export what is produced, although those countries are facing acute food shortages; and are not those exports often for biofuel, with all its questionable environmental dimensions? Do not such purchases tend to be made without proper community consent and, furthermore, without proper consideration of the economic and social consequences? What does the Prime Minister intend to propose to the G8 summit on land transparency and such purchases at the forthcoming meeting?
Baroness Northover: The noble Lord, who has worked in this area for a very long time, is right to highlight this as a potential problem. However, I cannot agree with his first statement about its scale because there is insufficient evidence. One thing that is extremely important and that we are pursuing is supporting the evidence-gathering in this area to see what the scale of the problem might be so that we can better address it. Nevertheless, the noble Lord is right to say that transparency is the key here. If we can promote that, we can see whether the acquisitions that people may have made reference to are simply anecdotal or whether
there is evidence of the nature that he is talking about. I assure the noble Lord that we are emphasising transparency and that at the G8 summit the Prime Minister will indeed focus on food security as one of the issues.
Lord Chidgey: What proportion of DfID’s aid budget has been allocated to the provision of more support for sustainable small-scale agriculture to help poor—mainly women—farmers feed their families? What measures are the Government taking to ensure that increased private investment in agriculture, as the Minister mentioned, is aimed at maximising poverty reduction and sustainable equitable growth, as highlighted by many NGOs, including Oxfam and ActionAid?
Baroness Northover: The noble Lord is right. DfID does support smallholder production, and one of the key issues here is trying to establish land rights. The United Kingdom is working in a number of countries to promote this and has increased the spending in this area. It is working in 13 countries to support smallholder farmers by supplying seeds, fertilisers and access to finance and by making sure that women, who are often the ones running these smallholdings, are particularly supported.
Lord McConnell of Glenscorrodale: Do the Government agree that the land reforms implemented in rural Scotland over the past decade have shown the benefit of involving those who live on the land in its future use? That benefits both the wider community and the individual families concerned, and may provide some lessons that could be used in our international development policy to assist those who are currently fighting against their movement from the land or the exploitation of their land in other parts of the world.
Baroness Northover: The noble Lord makes a good point. He will probably be aware that at the G8 last year the New Alliance for Food Security and Nutrition was set up specifically to take forward that approach of looking at the responsible development of agriculture, recognising its importance in sustaining the poorest communities and making sure that people are engaged in that positively. The UK is continuing to press forward that approach.
The Earl of Listowel: Will the Minister look particularly at any adverse impact on pregnant mothers and nursing mothers and their crucial role in the early development of children in terms of their being denied food because their area is being used to grow biofuels or for other uses?
Baroness Northover: The United Kingdom is extremely aware of the importance of supporting pregnant mothers and infants in their first days. The noble Earl will be aware that the first 1,000 days of gestation and a child’s life are so important to the future health of that child. The areas that I have just focused on support this, but I also flag up the fact that we have social safety nets. It is extremely important that financial support reaches pregnant women and those who are trying to support their families so that they have enough money to provide for those families.
Lord Bates: Is it not part of the evidence that could be considered the vast increase in local food prices in the poorest parts of this world? Is it not basically immoral to take food from countries in the developing world that cannot feed their own populations to feed biofuel incinerators here in the UK? We should be fuelling those biofuels from the massive food waste in developed countries, rather than have food scarcity in the poorest.
Baroness Northover: I was listening to the point on the “Today” programme about food wastage and it is extremely dramatic. Within DfID, we are working with other government departments to look at the impact of biofuels. It seems, although the evidence is disputed, that they have played a part in some of the food price spikes that we have seen. We are into the third one at the moment, which is largely because of the drought in the United States. However, the effect of using maize for biofuels is potentially significant and we are looking at this very closely.
Baroness Kinnock of Holyhead: My Lords, will the Minister confirm that discussions are taking place, or are planned to take place, with the World Bank about a public freeze by the bank of all agricultural investments that involve large-scale land acquisition? Does the Minister agree that such leadership from the World Bank would leverage responses from other investors and developing country Governments in a much needed initiative?
Baroness Northover: We do not agree that there should be a freeze in World Bank lending for agriculture, the reason being that to do so could disrupt valuable projects and because the World Bank itself has high standards in place to try to ensure that things are transparent. We are pushing for greater transparency than is already the case in what the World Bank does. However, it is probably missing the mark to aim at the World Bank rather than looking in other directions. It is extremely important that we take forward the World Bank’s engagement in advising Governments to try to make sure that any land acquisition is to the benefit of their communities.
Diabetes
Question
11.17 am
Asked By Lord Kennedy of Southwark
To ask Her Majesty’s Government what action they are taking to reduce the number of amputations due to diabetes.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, foot complications of diabetes are usually preventable. Early identification and prompt treatment prevent amputations. NICE guidelines recommend annual foot checks, which are included in the quality and outcomes framework for general practitioners. NHS Diabetes has established regional diabetes footcare networks. People with vulnerable feet require expert protection, while those with problems need urgent specialist care. Local national health services
are responsible for commissioning podiatry services and multidisciplinary specialist footcare teams for people with diabetes according to local needs.
Lord Kennedy of Southwark: I draw the attention of the House to my declaration of interests in respect of Diabetes UK. One hundred and twenty-five amputations take place each and every week in England alone, and 80% of those are preventable. The record of the Department of Health is not good; the figures are going up, not down. If I asked this question in a year’s time, what progress does the Minister expect that his department would have made to reverse that trend?
Earl Howe: The noble Lord is absolutely right that this is a major public health issue and one that impacts very seriously on the health and well-being of individuals, so it is a priority for us. We are committed to reducing the number of avoidable amputations among people with diabetes. In fact, progress is being made: although the number of amputations is going up, the rate is falling. However, we are under no illusion that this will be a growing problem because of the growing number of people with diabetes. All our work on improving completion of the NICE nine care processes for people with diabetes and improving timely access to specialist diabetic footcare multidisciplinary teams will support that aim, and the Diabetes UK Putting Feet First campaign has real potential to improve awareness of foot complications in diabetes.
Lord McColl of Dulwich: My Lords, does the Minister agree that the real way to reduce the number of amputations is to reduce the incidence of diabetes and that the way to do that is to do something about the obesity epidemic, which is the main cause of diabetes and one of the main causes of amputation? What is he doing to try to prevent that quango, NICE, misleading the nation and politicians, as it did, into believing that the answer to the obesity epidemic was to take more exercise when, although exercise is important, the real answer is to eat fewer calories?
Earl Howe: I agree with my noble friend about the importance of targeting obesity as a serious public health risk and one which leads to diabetes in many cases. I believe that, if my noble friend were to talk to NICE about its recommendations to prevent obesity, he would find that its line is slightly modified from the one that he has criticised. We should pay tribute to NICE for the good work it has done in the specific area of diabetes. The recommendations and guidelines it has issued have been very positive. There is, of course, a quality standard for diabetes, which is also excellent.
Baroness Hollins: My Lords, people with learning disabilities and those with serious mental illness have a higher incidence of diabetes. They have a later diagnosis and are therefore more at risk of complications. Does the Minister agree that one way to reduce the number of amputations associated with diabetes would be to improve access to diabetic care for people with learning disabilities or mental illness?
Earl Howe: My Lords, yes, I certainly do. There are a number of positive ways in which we can do that. One is the NHS health check, which should, if it is
performed correctly, pick up those with undiagnosed diabetes. Early identification of diabetics is key in this area, particularly for those who are at risk of ulceration. Other ways are targeting preventive services at those most at risk, including those with learning disabilities; early management of foot infection and rapid access to multidisciplinary teams; and having good diabetic foot prevention and ulcer management services in local areas.
Lord Harrison: My Lords, the point at issue is surely this: that to prevent the four out of five needless amputations that currently take place, Her Majesty’s Government need to respond to the Question of my noble friend Lord Kennedy by saying how they will ensure that there are those multidisciplinary groups with specialist knowledge of feet and the ability to make sure that there is not a postcode lottery as there is now. They should be properly monitored by the Government to ensure that a proper service is offered to diabetics at a time of decline in the amount of money going into the National Health Service.
Earl Howe: My Lords, there is no single magic bullet that will solve this problem, but undoubtedly better monitoring in general practice is one answer; the QOF incentivises that. The NHS outcomes framework will also incentivise clinical commissioning groups to ensure that those with long-term conditions—particularly diabetes—are properly looked after. The benefits of multidisciplinary teams are now proven. The evidence is there and, if we can shine a spotlight on the statistics—and there is, as the noble Lord knows, a wide variation in success rates across the country—that will be the key to driving better performance throughout the health service.
Lord Patel: My Lords, does the Minister agree that part of the problem is that while the NICE guidelines, if implemented throughout the country, would reduce the variation rate in amputations, particularly of lower limb extremities, it is not mandatory to implement those guidelines? He may be aware that several nations, including Scotland, have recently reported a reduction of 30% in the amputation rate, following strict protocols in diabetic management.
Earl Howe: My Lords, there are centres of excellence throughout the United Kingdom, from which I am sure the health service as a whole can learn. The noble Lord is absolutely right. He mentions the NICE guidelines; he is right that they are not mandatory, but they do point to best practice. By highlighting the data, we can ensure that commissioners and practitioners ask themselves the right questions about whether best practice is being followed.
Public Libraries
Question
11.24 am
Asked By Lord Stevenson of Balmacara
To ask Her Majesty’s Government how many public libraries closed during 2012.
The Parliamentary Under-Secretary of State, Department for Business, Innovation and Skills (Viscount Younger of Leckie): All parts of the public sector are contributing to reducing the deficit, including local government. In the circumstances, it is right and proper that local authorities look afresh at how they deliver library services. The Chartered Institute of Public Finance and Accountancy’s library statistics reflect that authorities are reviewing and reconfiguring their services with a net reduction of 74 mobile libraries and 76 static libraries in England in 2011-12. Overall, however, there are 3,243 libraries in England, which remains an impressive network.
Lord Stevenson of Balmacara: My Lords, first, I congratulate the Minister on his new appointment. In saying that, perhaps I may invite all Benches to regret that the noble Lord, Lord Marland, will be leaving us. With his colour and candour, he offered a lot to us and we will miss him.
According to our information, some 300 libraries closed last year across 40 local authorities. The Public Libraries and Museums Act 1964 provides the Secretary of State with powers to take action where a local authority is in breach of its duty to provide a comprehensive public library service. But, according to the DCMS website, the Secretary of State is in correspondence with a mere four local authorities. Will the Minister confirm the current situation and indicate whether the Secretary of State will be using her powers to ensure that the country retains a high-quality public library service?
Viscount Younger of Leckie: First, I thank the noble Lord for his kind words. I am fast learning how to multi-task, as I cover both BIS and the DCMS, but only for the next two days.
Returning to the reality of the question, I would like to reassure the noble Lord that the Government are doing much to support and develop libraries. They have taken a number of actions over recent months, including transferring responsibility for library development to Arts Council England, giving libraries access to significant funding opportunities. In addition, Arts Council England has allocated £6 million of its grants from the arts National Lottery funding. The figures presented by the noble Lord could be disputed and we will need to come back on that, but I stick by the figures that I have given in terms of library closures.
Lord Dubs: My Lords, will the Minister comment on a quote attributed to Winston Churchill in the middle of the war? Churchill was told that there was a plan to close libraries to raise money for the war effort. He said, “No you won’t. What the hell are we fighting for?”.
Viscount Younger of Leckie: I am not able to give a particular comment on that, except to say that I reiterate that the Government are very much behind the development of libraries. It is extremely important to ensure that we take note of technological change. There is changing demand for library services and it is important to bear that in mind.
The Earl of Clancarty: My Lords, among the figures recently released, is the Minister aware of the 8% reduction in full-time library staff in the past year? That is almost double the number in the previous year, which will have had a significant effect on opening hours and other library services.
Viscount Younger of Leckie: I am not aware of the figures that the noble Earl has given. However, I can say that this is part of the technological changes that are taking place. With his long interest in the arts, I am sure that the noble Earl will be aware that various changes are going on, particularly in terms of the move towards e-book lending, for example, and wi-fi. The issues are changing dramatically in terms of demand and we need to react to that.
Baroness McIntosh of Hudnall: Does the noble Viscount agree that the overall number of libraries is not really the significant issue? The issue is where they are and who has access to them. Does he further agree that the people who have most need of access to libraries are those who have very little other recourse to books and the benefits that books bring? What are the Government doing to ensure, whether directly or through the Arts Council England, that provision of libraries is available to the most deprived communities in this country?
Viscount Younger of Leckie: I take the point raised by the noble Baroness. It is true that sometimes, particularly in rural areas, individuals have more of a challenge or a difficulty in reaching a public library. However, the actual figures of reduction do not necessarily represent a pure reduction. For example, in North Yorkshire, 10 ageing mobile libraries were replaced with one superior model. The service changes but does not necessarily reduce.
Lord Dholakia: My Lords, I follow on from the previous question about the closure of libraries, particularly in the most deprived areas where minorities have settled. Does my noble friend agree that when we are emphasising to people the need to learn more about English and the history of our country, to deprive them of that knowledge, at the same time, could be very counter-productive?
Viscount Younger of Leckie: In answer to the noble Lord’s question, I wish to say what I meant to say in answer to the noble Baroness’s question as well. It is very much up to the local authority to decide what type of library service is given. As the noble Baroness and my noble friend are aware, there is a statutory duty to give a comprehensive and efficient service to the community. That is defined as meeting local needs within the context of available resources in a way that is appropriate to the identified needs of the communities that they serve.
Baroness Symons of Vernham Dean: Following up the previous two questions, would the noble Viscount be kind enough to place in the Library a list of where these libraries have been closed? I think that he cited in
his initial answer that 76 permanent libraries have been closed. Would he please publish a list of exactly where those libraries are?
Viscount Younger of Leckie: The point is noted, and I will look into that. On the assumption that I am able to do it, the sentiment is there that I will put the note in the Library.
Lord Phillips of Sudbury: My Lords—
Baroness Farrington of Ribbleton: My Lords, would the Minister—
Lord Phillips of Sudbury: My Lords, will the Minister accept that libraries are about far more than books? In an age where community life is under great strain, they are focal points for a whole range of activities besides the traditional one. Does that not make the closure of any library a self-destructive act?
Viscount Younger of Leckie: Not necessarily. The quick answer is that library services are changing, as I mentioned earlier, as a result of changing demand. It is, however, true that there is an opportunity to use libraries for different services rather than just taking books out. This includes the use of wi-fi and the provision of coffee shops; for example, there are some libraries attached to leisure centres. I repeat, therefore, that the situation is changing.
Welfare Benefits: Women
Question
11.32 am
Asked By Baroness Royall of Blaisdon
To ask Her Majesty’s Government what assessment they have made of the differential impact on women of changes to welfare benefits.
The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud): My Lords, the Government are supporting women and families, for example by changing childcare support through universal credit and by lifting 2 million of the lowest-paid workers, six out of 10 of whom are women, out of income tax altogether.
Baroness Royall of Blaisdon: My Lords, I am grateful for that Answer. The noble Lord says that the Government are supporting women and their families; however the House of Commons Library analysis suggests that 81% of the £1.065 billion raised from the new direct tax credit and benefit changes will come from women. When the Government decided to make these changes, were they really aware of the specific impact on women? If they were not aware of this, it is a disgrace. If they were aware of this, it is an even greater disgrace.
Lord Freud: My Lords, the impact on women of the uprating changes, in a Bill that will come to this House shortly, is greater; 33% of women are affected, against only 29% of men. The redistribution under universal credit switches slightly and, in proportion, households
with women do slightly better in numbers than households with men—40% of households with women are gainers, compared with 39% of households with men.
Lord Forsyth of Drumlean: My Lords, can my noble friend explain how it can be fair that, because of the changes in child benefit, in households with three children where only one partner is working and has a student loan, if their salary goes up from £50,000 to £60,000, they will face an effective marginal tax of 75%? In contrast, households with incomes of £100,000, where both partners are working, will face a marginal tax of 45%. How is that consistent with a fairer tax system?
Lord Freud: My Lords, the reason for the reduction in child benefit for those on higher incomes is so that it could be implemented in this way. As my noble friend will know, it has been adjusted to provide a taper at £50,000 to £60,000 to smooth that transition.
Baroness Hollis of Heigham: My Lords, the noble Lord’s right honourable friends in the other place, the Chancellor of the Exchequer and the Secretary of State for Work and Pensions, are waging war on so-called shirkers, in part by cutting their benefits. However, as my noble friend has said, two-thirds of those benefit cuts are falling on women. If you take into account changes in pensions, pay and taxes, more than 80% of the cuts are falling on women who are bringing up children, caring for the elderly and holding down a part-time job at minimum wage. Does the Minister agree with his right honourable friends that apparently the face of a shirker is now that of a mother, a carer and a woman?
Lord Freud: My Lords, as regards the reduction, or potentially below-inflation increase, in benefits, a lot is happening in the economy in relative terms. Today’s article in the Financial Times is one of the best analyses of that that I have seen. I am sure that others have seen that article, which shows how squeezed people are in the middle and upper-middle tiers of income distribution. They have fallen right back to the level of earnings in 2002-03, while real incomes in the bottom 30% were 3% to 4% higher than they were. That is the context in which we are looking at the adjustments to the benefit levels.
Lord Winston: My Lords, is the Minister aware that the average woman of child-bearing age loses about two eggs per hour, unlike the Minister who is making 50,000 sperm per hour? The consequence is that women’s fertility falls rapidly. Does he want to see equality of women in the workplace by trying to support them rather better during their child-bearing years?
Lord Freud: My Lords, I will not go into the detailed figures that the noble Lord mentioned. There is very substantial support for women of child-bearing age as, over the past decade, statutory maternity pay and maternity allowance have moved up from being payable for 18 weeks to being payable for 39 weeks. That is the context in which that support should be looked at.
Information Committee
Membership Motion
11.38 am
Moved By The Chairman of Committees
That Lord Lipsey be appointed a member of the Select Committee in place of Baroness Pitkeathley, resigned.
Administration and Works Committee
Motion to Agree
11.38 am
Moved By The Chairman of Committees
That the 1st Report from the Select Committee (HL Paper 96) be agreed to.
The Chairman of Committees (Lord Sewel): My Lords, this is a short and straightforward report so I do not intend to detain the House for long. However, given that an amendment has been tabled to the Motion, I thought that it might be useful if I explained to the House how the committee reasoned its proposals.
As explained in the report, last year, under the chairmanship of my predecessor, the committee was asked to consider an alternative location for holding press conferences following the end of the lease on No. 1 The Abbey Garden. The committee agreed that the meeting room in Fielden House should be used for press conferences in place of No. 1 The Abbey Garden, and that arrangement has worked well since April 2012.
The committee was also asked to consider the appropriateness of continuing to use Committee Room G for press conferences. As the report explains, the committee felt that it was no longer appropriate to continue to use Committee Room G for several reasons. First, the committee felt that it would be useful to draw a distinction between those press conferences that are held by an official committee of this House and those that are organised on behalf on an individual Member. Members of the public often do not appreciate the difference between a parliamentary Select Committee, an all-party group and a collection of Members. The committee therefore felt that it would be sensible to amend the rules so that there was some distinction between them. If this report were agreed to, press conferences held by Select Committees would still be held on the Committee Room corridor while press conferences held by other Members would not.
The committee also considered the practical complications of holding press conferences in the Palace of Westminster itself. Members will know that meeting rooms are often in short supply, especially in the Palace. While there is not a large number of press conferences held each year preventing the use of rooms in the Palace, for some of them this will reduce the burden a little.
Although this may be seen as a relatively minor logistical change, it has been necessary to bring the matter before the House itself due to the fact that Committee Room G was originally included in the
rules governing the use of facilities agreed by the House in 2010. As a breach of these rules constitutes a breach of the code of conduct, it is important that any amendments to the rules are agreed by the House and are clear and workable.
It is of course right that Members should be able to hold press conferences in Parliament as part of their parliamentary work, and this report is not intended to undermine that work. Indeed, I understand that there has been an informal suggestion that the meeting rooms in Millbank House could be used for press conferences. That would indeed answer any questions on limited capacity, and I welcome that suggestion. If the noble Lord, Lord Avebury, feels at the end of the debate that he does not wish to press the amendment, and if that suggestion on Millbank House is made, I would be more than happy to take the matter back so that the committee could consider that one specific amendment. I beg to move.
To move, as an amendment to the above motion, to leave out “agreed to” and insert “referred back to the Committee for further consideration; and that it be an instruction to the Committee that any future recommendations allow for Members to continue to hold press conferences in Committee Room G”.
Lord Avebury: My Lords, as the report of the Administration and Works Committee says, the House agreed on 16 March 2010 that:
“Members may not hold press conferences in committee rooms on the Committee Corridor, but they may do so in Committee Room G and other meeting rooms with Black Rod’s permission”.
That remains the position up until now, except that when the lease on 1 The Abbey Garden most unfortunately came to an end, it ceased to be available. That room held 40 people if the partition between the two rooms was opened up, and tea or coffee could be provided, a facility which is not available in Fielden House, or in Committee Room G for that matter. Now it is proposed that Committee Room G should not be used for press conferences, so that Fielden House will become the only location available to Members, rather than the three that we had before Abbey Garden was relinquished.
“this arrangement was in place since April 2012”,
but that decision was not published or reported to the House at the time. I only found out about it after holding a press conference on Bahrain in Committee Room G on 23 August and a meeting on 17 September to mark the 20th anniversary of the assassination of Dr Sadegh Sharafkandi, leader of the Kurdish Democratic Party of Iran, and three of his colleagues at the Mykonos restaurant in Berlin by Iranian agents. On the Friday before the second of these meetings, Black Rod e-mailed me at 1522 attaching a paper he had submitted to the committee and the minutes of the committee’s meeting of 27 March, in which it purported to make the decision that we are now debating.
11.45 am
I telephoned Black Rod’s office at 1550, and when there was no answer I e-mailed him at 1652, saying that I had asked the attendants about transferring the meeting to Fielden House but was told that nobody was going to be on duty there on the Monday evening. In that e-mail I protested through Black Rod to the Administration and Works Committee about taking this clandestine decision without consulting Members. He replied later the same evening saying that as it was too late to change the arrangements for the meeting on Monday, the use of Committee Room G would have to stand. I wrote to Black Rod asking if the committee’s decision would be reconsidered on the grounds that it had been taken without consulting Members and particularly those who hold press conferences, however defined.
The commemoration of Dr Sharafkandi’s assassination was billed as such and the attendance of journalists was incidental to it. I would like to ask the Chairman of Committees whether, if this Motion is carried, it means that Members are not allowed to invite journalists to meetings in the Palace of Westminster that are not described as press conferences. I will come back to that point later. However, it does mean that press conferences have to be held between 9 am and 5 pm, because those are the hours during which attendants are on duty in Fielden House unless special arrangements are made. Fielden House accommodates only 24 people, to the 40 of Committee Room G, and is therefore unsuitable for important events. It is also unsuitable for events that are to be attended by disabled people, because Fielden House is some distance from the main Palace of Westminster.
Part 3 of the report suggests that the House itself might be associated with the proceedings of press conferences. Having held numerous press conferences in Committee Room G, Fielden House and 1 The Abbey Garden, I am not aware that any of them has been reported as an official event of the House of Lords, nor have words spoken at press conferences been attributed to the House of Lords. If evidence to that effect was presented to the Administration and Works Committee it was not thought worthy of mention in its report. I suppose that the risk was purely hypothetical.
In any case, if it suited the editorial policy of an unscrupulous newspaper—non-British of course—the proceedings could just as well be presented as effectively sanctioned by the House if they were held in Fielden House or anywhere else on the Parliamentary Estate. Members of another place have a large number of rooms for press conferences from which to choose. The rooms in which photography and TV are allowed include the Jubilee Room, the Attlee and Macmillan Rooms in Portcullis House, Room C in 1 Parliament Street and the W Rooms. No distinction is made between meetings of a general nature and press conferences.
The risks that are supposed to arise in Committee Room G must affect meetings in any of those locations available to the Commons, although it may be said that it is not for us to compare our decisions with those of another place. Surely it is illogical and perverse
to come to a different view from theirs on a matter which is said to have a bearing on the reputation of Parliament as a whole.
The Chairman of Committees wrote to me saying that he would circulate my letter to the Administration and Works Committee for consideration at its next meeting on 23 October last, and after that he wrote again to say that the committee had decided to uphold the decision that press conferences could be held only in Fielden House. In the second letter he noted that the use of rooms for press conferences was contained in the rules governing the use of facilities in the House of Lords, which had been agreed by the House. Therefore the change, to cease using Committee Room G for this purpose, would also need to be agreed by the House. Until and unless that happens the previous rules apply and Committee Room G may continue to be used for press conferences. The suggestions that were made to me during the Summer Recess—that the two meetings to which I referred earlier should have been held in Fielden House—were erroneous, and I should like that to be acknowledged.
It is true that press conferences sponsored by Members often deal with matters that are controversial and of significant public interest. In December, for example, I co-hosted a meeting with Anne Main MP on the outlook for the Bangladesh general election in 2013 and I chaired a meeting on human rights in Gambia. There were no media persons at either of those meetings, as it happens, but on occasion it may well occur that journalists are invited for the contributions that they make to the discussion. For example, I am sure that there must have been meetings on the Leveson report sponsored by Members, in which journalists were invited to participate. Is it permissible for the media to be present at an event as long as it is not described as a press conference? What is the sponsor of the meeting supposed to do if attendees make notes of what is said, raising the possibility that they might give information to the media—or, even worse, take pictures on smartphones that might then be given to the press?
If any noble Lord or honourable Member seeks to use the Palace of Westminster to propagate illegal extremist views such as incitement to racial or religious hatred—as I believe may have occurred in hearings of the committee, although it is not mentioned in its report—the matter should be dealt with ad hoc by the Administration Committee in another place, or by the Administration and Works Committee of this House. We should not shut down the means whereby Members seek to give a voice to legitimate views, particularly of those who are silenced in other countries. This applies also to meetings at which, because of the theme, views may be expressed that would be strongly disapproved of by the majority of noble Lords.
There is a significant appetite among some in the foreign media for the views of oppressed people that are aired at some of the meetings held on the Parliamentary Estate, yet we are now being asked to reduce the number of possible locations of such meetings from three to one—a small conference room at some distance from the Palace of Westminster where you cannot even offer journalists a cup of tea. I suggest that we ought to give thought to ways of expanding
the contacts we have with the media, and that reducing the means we now have would be moving in the wrong direction. I beg to move.
Lord Jenkin of Roding: My Lords, I shall not detain the House for more than a moment. I have great respect for my noble friend and I listened to his remarks with considerable sympathy. However, I make it very clear that I support the refusal to hold press conferences in Room G. It is one of the consequences of the overpopulation of this House that the number of committee rooms available to noble Lords for general purposes is under great pressure. That being the case, it is right that unofficial press conferences, however worthy—I totally understand the point made by my noble friend Lord Avebury—should be held elsewhere.
I asked my noble friend whether he had considered going to Millbank House. I made inquiries about this. The Archbishops’ Room in Millbank House holds a large number of people, and other facilities are available. It was suggested that access arrangements at Millbank House are too difficult if one wants to have a number of people. I do not accept that for one moment. I was very glad to hear the Chairman of Committees say that Millbank House could be another location. I hope that my noble friend Lord Avebury might be prepared to recognise that that is a considerable step in that direction for which he is calling, and may not feel it necessary to divide the House.
Lord Pearson of Rannoch: My Lords, will the noble Lord inform us of the capacity of Millbank House? That would help the debate.
Lord Jenkin of Roding: My Lords, I have held a number of meetings in the Archbishops’ Room at Millbank House. You can get at least 30 or 40 people in there—I do not know the exact figure. It would certainly be big enough to contain any reasonable press conference. It is a very good room with a large table and a lot of chairs around it. You can have an extremely good meeting in that room.
Lord Pearson of Rannoch: My Lords, I support the amendment in the name of the noble Lord, Lord Avebury. I do so as the Member of your Lordships’ House who has held perhaps the two most controversial and packed press conferences in recent years—after the Dutch MP, Mr Geert Wilders, was banned by the then Home Secretary from entering this country, and, when he had won his appeal against that decision, after he had shown his film, “Fitna”, privately in Committee Room 4 to Peers and MPs.
The Home Secretary’s decision turned the whole saga into a world media event and both rooms at Abbey Gardens were not nearly big enough to hold even half the number of media outlets wanting to attend both events. For the second conference, I had applications to attend from 92 outlets worldwide, including two Japanese film crews, and spaces had to be severely rationed. From that experience, I fear I have to disagree with the key reasoning in this report, leading the committee to cease using Committee Room G for press conferences.
“Whilst it is right and proper that Members should be able to hold press conferences in Parliament as part of their Parliamentary work”—
as the noble Lord, Lord Sewel, has reminded us. What has happened to that? I say hear, hear to it, but it appears to have disappeared and been overridden by less worthy considerations. The quotation continues:
“the House as a whole may not wish to associate itself with the views given in such press conferences”.
At no time during or after the Wilders saga was there any suggestion from anyone that your Lordships’ House associated itself with Mr Wilders’s views. Indeed, my noble friend Lady Cox and I made clear that we ourselves disagreed with some of them, but our overall purpose was to secure his right to free speech as an elected Dutch politician. So that part of the report simply does not stand up. Nor does the next sentence:
“the setting of Committee Room G, right within the heart of the Palace of Westminster, means that it is not always clear from a public perspective that the press conference is not an official event being held on behalf of the House”.
Further down in the report, it states:
“Furthermore, press conferences can attract a large number of journalists and other guests, which can be difficult to manage from a security point of view”.
Committee Room G is not “right in the heart of the Palace of Westminster”. It is on its extreme fringe. It shares its public entrance with the Attlee and Cholmondeley Rooms, both of which regularly handle large numbers of strangers. There is a permanent police presence on duty.
On security grounds alone it would have been better to have held Mr Wilders’s conferences in Room G than in Abbey Gardens or Fielden House. I suggest that this may apply to other controversial guests whom your Lordships may wish to entertain in future. Mr Wilders would not have had to go by a circuitous route to Abbey Gardens with his bodyguard and all the rest of it. My noble friend Lady Cox and I would not have had to walk from the Palace of Westminster to Abbey Gardens under threat of what we were assured would be sniper fire. We would not have had to brave the blandishments of thousands from the English Defence League who were gathered—though I cannot quite remember on which side of the argument. Nor would we have had to fear the thousands of Muslims with whom we were threatened, but who did not in fact materialise.
Surely press conferences are usually confrontational events. Did the committee think of that point? If a press conference is controversial, which is what seems to be moving the committee, then you can bet your bottom dollar that the media will test the controversial viewpoint strongly. How does your Lordships’ House suffer from that? I fear that the conclusions of this report do nothing to support freedom of speech or the reputation of this House. Indeed, I fear they impede it.
Finally, there is the matter of capacity. Fielden House is limited to, I think, 30 people—the noble Lord, Lord Avebury, mentioned 24—but Room G is limited to 45. No doubt more journalists can be accommodated standing, but what about television
crews? Fielden House is simply inadequate to hold any but a conference in which the media is not much interested. That cannot be in the interests of your Lordships’ House. Surely we can leave the decision about whether Room G or Fielden House should be used for any particular press conference to Black Rod and the Yeoman Usher. Why would they not get it right? What is wrong with that? I support the amendment.
Noon
Lord Dykes: My Lords, I strongly support the words uttered by my noble friend Lord Avebury following the remarks of the Chairman of Committees. It is a drastic suggestion to exclude the only room within the Palace precincts that would be available for the purposes of a press conference, or for use by any individual Member or Members together for meetings on any cause whatever, in the normal system of booking a room. It would be very drastic if it were completely removed because it is quite important psychologically, for a number of reasons, for a Member to be able to make an application for the use of a room within the Palace precincts. It makes a difference.
I declare an interest having done a book launch of my own, with an outside colleague, in February of last year: we used Room G and journalists attended. The idea that that would bind the House and Members as a whole to the content of my remarks in launching the book, and to other questions that arose from members of the audience, both non-media and media alike, is a most extraordinary suggestion. No such problem exists in the other place, where it routinely happens. However, given that MPs are more active Members, in one sense, one would expect that to be so.
However, bearing in mind that often Room G would be booked up anyway by other Members, and therefore not available if someone applied to use it, not having that choice in the Palace itself would be undesirable. Although I do not wish to comment on the more polychromatic and allegorical suggestions of the noble Lord, Lord Pearson, about the content of the meeting to which he referred, the points he made were valid. You must have that option as a Member and, perhaps, to make the choice to go elsewhere, to Fielden House or Millbank House, if you prefer. To narrow down the choice in this way is a strange request in the committee’s conclusions and should be reconsidered very carefully.
Lord Berkeley: My Lords, I share the concern of other noble Lords who have spoken about this paper but, first, I ought to ask the Chairman of Committees: what is the problem that he and his committee are trying to solve? How many press conferences of the kind which will be banned from Committee Room G are held each year?
I know that there is pressure on rooms. I very occasionally hire a room to help, say, with a campaign, but if a couple of journalists happen to turn up, does that make it illegal? When is a press conference a press conference, rather than a few journalists with other people there? I do not know the answer and the Chairman of Committees may be able to help with that.
I do not often agree with the noble Lord, Lord Pearson of Rannoch, but on this occasion I agree about the problems of getting large crowds into Committee Room G, as it says in paragraph 4. Nothing like as many people come into there as come into the Cholmondeley Room for receptions at lunchtime and in the evening. The security arrangements usually handle them fairly well and so the numbers cannot be a reason for excluding people.
The other problem that has been mentioned is the issue of room bookings. If we are to make more use of Millbank and Fielden House, the hours they are available should be appropriate to when the House is sitting. However, surely the booking arrangements for committee rooms should all be done in one place. The booking arrangements for committee rooms in the House are extremely good and efficient now, so why should we have to phone someone else if we want to book a room across there? I know there is pressure on booking rooms but if it is a question of trying to reduce the number of events and press conferences that take place within the House, I would be very surprised if this recommendation would make much difference to the availability of rooms and the demand for them.
I shall be interested to hear from the Chairman the real reason for this and whether he can define what a press conference is that will be covered by this.
Lord Howell of Guildford: My Lords, the noble Lords, Lord Avebury, Lord Pearson and Lord Dykes, have all made an extremely strong case, and the committee would be wise to take us back to look at it again.
The Chairman of Committees: My Lords, in my opening comments I acknowledged that there had been an error in the way in which the process had moved toward implementation of the original decision by the Administration and Works Committee, in that its recommendation had not been brought before the House as it should have been. Once that was recognised, the decision of the Administration and Works Committee was not implemented. It has been held in abeyance until we have had this debate today. I freely acknowledge, therefore, that there was a fault in the process, which we have sought to rectify by bringing the report before your Lordships’ House today.
There have been three areas of argument on the basis of the comments that have been made. First, let us deal with what is and what is not a press conference. In about 99.9% of cases, it is obvious whether it is or is not a press conference. If Members are in doubt whether the event they are organising is a press conference, they should seek the advice of Black Rod. If they have sought his advice, they are deemed to have complied with the rules and to be in the clear. That is the way to deal with what is a press conference.
One of the other areas is distinction. Is it right that we draw a distinction between those press conferences that are clearly official parliamentary press conferences, which deal with reports issued by Select Committees or other organisations directly responsible to the House, or those press conferences that are held, quite rightly and understandably, at which Parliament provides in some way a platform for other people to give views?
That is the argument on distinction. There is a strong case to say that a distinction ought to be maintained; that official parliamentary press conferences take place along the Committee Corridor, where the committees themselves are held, and that the platform type of press conference is held within Parliament though at one remove from the Palace itself.
Lord Berkeley: I am very grateful to the Lord Chairman. As the noble Lord is probably aware, I am secretary of the All-Party Cycling Group. Next week this group will start an inquiry into the provision of cycling facilities, which will consist of between six and eight MPs and Peers, who will produce a report. Do I, as secretary, have to ask Black Rod’s permission to have a press conference to launch that report in the House?
The Chairman of Committees: Yes. Not to launch the report in the House; if the noble Lord has a press conference, it would be perfectly possible for him to have it in Millbank House. That would be allowable if the House accepts my suggestion, and if the noble Lord, Lord Avebury, accepts my suggestion, that he does not persist with his amendment, and we take back this report purely on the grounds of enabling the committee to consider the Millbank House option.
Lord Pearson of Rannoch: My Lords, further to that point; if Black Rod can decide what is and what is not a press conference, why can he not be trusted to decide where it should be held, particularly from the point of view of security, which may be vital to the event in question? It may be clearly more in the interests of security that it should be held in Committee Room G than in either Millbank House or Fielden House.
The Chairman of Committees: The extent to which we actually move decision-making away from the Chamber and on to Black Rod is a matter of fine judgment. There are some areas where that is perfectly reasonable, and seeking his advice on whether the meeting that was being held was a press conference, if the Member himself or herself was in doubt, would be helpful because it would mean that the Member was able to ensure that they were not breaching the rules by at least seeking the advice of Black Rod and acting upon it.
Clearly, though, with regard to the business of where that press conference should be held, the rule that we are trying to establish is that it is right to make a distinction between parliamentary press conferences, held to discuss and debate a publication, a report, of Parliament, which will be held within the Palace itself, and what are called platform press conferences where Parliament, quite properly and rightly, is being used to provide a platform for views expressed by people from beyond Parliament. The latter, although held within Parliament, would not be held within the Palace; they would be held in Millbank House or Fielden House, and on the whole people will feel very comfortable with that distinction.
The second argument is about capacity.
The Chairman of Committees: I have to say that I thought that this was going to be a short debate, but it is in danger of turning into yesterday’s debate.
Lord Berkeley: I am very sorry to intervene again, and I am grateful to the noble Lord. Do the same rules about the distinction between official and semi-official press conferences apply in the House of Commons? Do Members of Parliament have to ask the Serjeant at Arms if they can book a room within the building?
The Chairman of Committees: I am unaware of the precise rules that apply in the House of Commons, but as I understand it the House tends to deal with this matter by having a very strict rule about recording, photography and filming. That is the way in which it has dealt with the problem. There is a very strong ban, as I understand it, on filming in House of Commons Committee Rooms.
On capacity, I understand the concern that the rooms in Fielden House may not be large enough to accommodate a significantly populated press conference, though I have to say that in my experience that does not happen very often in this House. That is why I am very much attracted to the suggestion that we open up rooms in Millbank House, particularly the Archbishops’ Room, which is a large room that can accommodate events, and I would have thought that this would satisfy all the arguments on capacity. On that basis—
Lord Pearson of Rannoch: From what the noble Lord, Lord Jenkin, has informed the House, which is why I put the question to him, the room in Millbank is no larger than the room in Fielden House. It is the same size, so what advantage can there be? We can have two press conferences, but a single large one still cannot be held.
The Chairman of Committees: I am reluctant to challenge the noble Lord on that issue. From my somewhat cursory examination of the rooms it looks quite a bit bigger to me, but never mind. As I say, I am more than happy to take the report back specifically on the use of Millbank House if the noble Lord, Lord Avebury, wishes to withdraw his amendment.
Lord Avebury: My Lords, I am grateful to all those who have spoken, particularly the noble Lord, Lord Howell, whose influence I hope will lead to a favourable decision when we come to the end of this debate. I am not disposed to withdraw my amendment; I wish to press it to a Division, and I would like to explain why. First, the noble Lord the Chairman of Committees has not dealt with the point that I raised about disabled Members having difficulty getting to Fielden House, and the same argument applies to Millbank House. That has been reaffirmed to me during this debate by a particular disabled Member who says that it is not possible for disabled Members to attend any meetings in Millbank House when there is a threat of a Division because they simply cannot get back from there in time. I suggest that no attention whatever has been
given to the argument which I mentioned in my introductory speech: that it is grossly inconvenient and sometimes impossible for disabled Members to attend any meetings in Fielden House and the same applies to Millbank House.
12.15 pm
Lord Higgins: If I have understood the situation correctly, the Chairman of Committees has said that he is prepared to take it back to the committee, including the issue of Committee Room G. Is that not right?
The Chairman of Committees: If I could clarify, I am prepared to take back the report purely on the limited area of the use of Millbank House. If, of course, the noble Lord, Lord Avebury, persists in his amendment, I will maintain the report and the Millbank House option will not be considered.
Lord Higgins: In that case, the situation is rather clearer and I had misunderstood. Would it not be more sensible for the noble Lord to take it back to the committee without any restraint on what it can discuss? If we go ahead and, as I think is likely, carry the noble Lord’s amendment, then we are tying the hands of the committee when it needs to take into account the wider issues, including the use of Room G. I should have thought we could proceed on that basis.
Lord Hunt of Kings Heath: My Lords, perhaps I might offer a bit of advice. We did think that the Chairman of Committees had said that he would agree to a reference back to consider Millbank House. However, he said it on the basis of the noble Lord, Lord Avebury, not pursuing a vote on his amendment. I sense the feeling of the House would be that, even if the noble Lord were to pursue the amendment to a vote—and he were to lose—the committee might still consider the Millbank House option. Might he not just reflect on that?
The Chairman of Committees: I am always happy to reflect. The difficulty is that we have a bit of a procedural problem about the nature of the Motion that is before us. I can give the categoric assurance that, if it is withdrawn, I can do it. However, if the noble Lord divides the House and loses, we will have divided on the report and the report will then be carried. I am sure that the committee would wish to take the sense of the House but I cannot give the cast-iron procedural guarantee that I could if the noble Lord withdraws his amendment.
Lord Avebury: I am not prepared to accept that undertaking. The argument the noble Lord has advanced that Millbank House is adequate for the purposes of press conferences is spurious. The noble Lord did not even venture to say anything in his intervention just now about the difficulties that disabled Members have in getting to Fielden House. The difficulties they have in getting to Millbank House are no less.
In conclusion, I do not think the distinction between press conferences that are held by an official organ of the House, such as a Select Committee, and those that are held by private Members is fully appreciated. That was borne out by the noble Lord, Lord Pearson of Rannoch. No one attributed the views that were expressed at the meeting with Geert Wilders to the House. Nor did anyone think that any sentiments expressed at that press conference either by the noble Lord himself or by his noble friend Lady Cox were attributable to the House. No one has ever said that things that are dealt with at private press conferences are the views of the House. So that was a spurious argument. I believe most people would agree that we should retain the use of Committee Room G and I would ask the House to decide accordingly.
12.19 pm
Division on amendment to the Motion.
Contents 82; Not-Contents 163.
Amendment to the Motion disagreed.
CONTENTS
Adams of Craigielea, B.
Addington, L.
Ahmed, L.
Alton of Liverpool, L.
Avebury, L. [Teller]
Benjamin, B.
Berkeley, L.
Blackstone, B.
Boateng, L.
Bonham-Carter of Yarnbury, B.
Browne of Belmont, L.
Campbell of Alloway, L.
Chidgey, L.
Clancarty, E.
Cohen of Pimlico, B.
Cotter, L.
Coussins, B.
Davies of Stamford, L.
Dholakia, L.
Doocey, B. [Teller]
Dubs, L.
Dykes, L.
Falkner of Margravine, B.
Foulkes of Cumnock, L.
Glasgow, E.
Grade of Yarmouth, L.
Greaves, L.
Greenway, L.
Grey-Thompson, B.
Hamwee, B.
Hanworth, V.
Healy of Primrose Hill, B.
Higgins, L.
Hollins, B.
Howell of Guildford, L.
Hussein-Ece, B.
Jolly, B.
Kakkar, L.
Kennedy of Southwark, L.
Kilclooney, L.
Kirkhill, L.
Liddle, L.
Lipsey, L.
Listowel, E.
Low of Dalston, L.
McColl of Dulwich, L.
Maclennan of Rogart, L.
Marks of Henley-on-Thames, L.
Masham of Ilton, B.
Miller of Chilthorne Domer, B.
O'Neill of Bengarve, B.
Palmer of Childs Hill, L.
Parminter, B.
Pearson of Rannoch, L.
Pendry, L.
Phillips of Sudbury, L.
Plant of Highfield, L.
Ramsay of Cartvale, B.
Redesdale, L.
Rennard, L.
Roberts of Llandudno, L.
St John of Bletso, L.
Scott of Needham Market, B.
Sharkey, L.
Sharp of Guildford, B.
Shipley, L.
Shutt of Greetland, L.
Smith of Finsbury, L.
Soley, L.
Steel of Aikwood, L.
Stone of Blackheath, L.
Stoneham of Droxford, L.
Storey, L.
Teverson, L.
Thomas of Winchester, B.
Tonge, B.
Turnberg, L.
Tyler of Enfield, B.
Whitaker, B.
Williams of Baglan, L.
Willis of Knaresborough, L.
Winston, L.
NOT CONTENTS
Aberdare, L.
Alderdice, L.
Anderson of Swansea, L.
Anelay of St Johns, B.
Armstrong of Ilminster, L.
Astor of Hever, L.
Attlee, E.
Bach, L.
Bassam of Brighton, L.
Bates, L.
Berridge, B.
Best, L.
Bew, L.
Bhattacharyya, L.
Bichard, L.
Boothroyd, B.
Brabazon of Tara, L.
Brooke of Alverthorpe, L.
Brookman, L.
Brougham and Vaux, L.
Browning, B.
Cameron of Dillington, L.
Campbell-Savours, L.
Cathcart, E.
Christopher, L.
Clarke of Hampstead, L.
Clinton-Davis, L.
Collins of Highbury, L.
Colwyn, L.
Condon, L.
Courtown, E.
Craigavon, V.
Crawley, B.
Dannatt, L.
De Mauley, L.
Dean of Thornton-le-Fylde, B.
Dixon-Smith, L.
Donaghy, B.
Eames, L.
Eaton, B.
Eccles of Moulton, B.
Elder, L.
Empey, L.
Falkland, V.
Farrington of Ribbleton, B.
Faulkner of Worcester, L.
Fookes, B.
Forsyth of Drumlean, L.
Fowler, L.
Fraser of Carmyllie, L.
Freeman, L.
Gale, B.
Garden of Frognal, B. [Teller]
Gardiner of Kimble, L.
Gardner of Parkes, B.
Geddes, L.
Gibson of Market Rasen, B.
Gordon of Strathblane, L.
Gould of Potternewton, B.
Graham of Edmonton, L.
Grantchester, L.
Greengross, B.
Grocott, L.
Hanham, B.
Hart of Chilton, L.
Hill of Oareford, L.
Hollis of Heigham, B.
Howe, E.
Howe of Aberavon, L.
Howe of Idlicote, B.
Hughes of Woodside, L.
Hunt of Kings Heath, L.
Hylton, L.
Inglewood, L.
Irvine of Lairg, L.
James of Blackheath, L.
Janner of Braunstone, L.
Jay of Ewelme, L.
Jay of Paddington, B.
Jenkin of Roding, L.
Jones of Whitchurch, B.
Jopling, L.
Judd, L.
King of Bridgwater, L.
Kinnock of Holyhead, B.
Knight of Weymouth, L.
Laming, L.
Lamont of Lerwick, L.
Lea of Crondall, L.
Lester of Herne Hill, L.
Lexden, L.
Lyell, L.
McAvoy, L. [Teller]
Macdonald of Tradeston, L.
McIntosh of Hudnall, B.
McKenzie of Luton, L.
McNally, L.
Manchester, Bp.
Mancroft, L.
Mar, C.
Massey of Darwen, B.
Mawson, L.
Meacher, B.
Monks, L.
Montgomery of Alamein, V.
Montrose, D.
Morris of Aberavon, L.
Morris of Bolton, B.
Morris of Handsworth, L.
Moynihan, L.
Northbourne, L.
Northover, B.
Norton of Louth, L.
O'Neill of Clackmannan, L.
Oxburgh, L.
Patel, L.
Pitkeathley, B.
Ponsonby of Shulbrede, L.
Powell of Bayswater, L.
Prosser, B.
Quirk, L.
Radice, L.
Reid of Cardowan, L.
Rendell of Babergh, B.
Richard, L.
Rowe-Beddoe, L.
Scotland of Asthal, B.
Scott of Foscote, L.
Seccombe, B.
Selsdon, L.
Sharples, B.
Sherlock, B.
Shrewsbury, E.
Simon, V.
Skelmersdale, L.
Slim, V.
Smith of Basildon, B.
Stirrup, L.
Stowell of Beeston, B.
Swinfen, L.
Symons of Vernham Dean, B.
Taylor of Bolton, B.
Temple-Morris, L.
Thornton, B.
Tomlinson, L.
Touhig, L.
Trees, L.
Trefgarne, L.
Trumpington, B.
Turner of Camden, B.
Wakeham, L.
Wall of New Barnet, B.
Wallace of Saltaire, L.
Wallace of Tankerness, L.
Walpole, L.
Warner, L.
Warnock, B.
Wasserman, L.
Wei, L.
Wheatcroft, B.
Wilcox, B.
Wilson of Tillyorn, L.
Younger of Leckie, V.
12.32 pm
The Chairman of Committees: My Lords, it has been possible to clarify in the intervening period what would be the best procedural method to ensure that the House’s will is properly expressed and acted on. In those circumstances, I think that the best way forward is for me to withdraw the Motion and to take the report back purely on the basis of looking at the Millbank House option.
Disability Services
Over-looked Communities, Over-due Change,
Motion to Take Note
12.33 pm
To move that this House takes note of the report by Scope, Over-looked Communities, Over-due Change, on disability services for people from black and minority ethnic backgrounds.
Lord Boateng: My Lords, I rise, somewhat belatedly, to move the Motion standing in my name. To be black, a member of an ethnic minority or disabled is to know what it is to be invisible—to be there but somehow not be seen, or to be heard but simply not heeded. That concept is difficult to explain. It is difficult, frankly, for those of us who happen to be members of the black and minority ethnic community or who happen to be disabled to talk about. Yet it is, for all of us, a fact of life, and this valuable report demonstrates that most effectively, I would argue, because it reveals what a toxic mix it can be to be both black and disabled. You suffer a double whammy of neglect and disadvantage. All too often you find yourself between a rock and a hard place.
The report, Over-looked Communities, Over-due Change, makes salutary reading. Disabled people from black and minority ethnic communities and their families are often left disengaged from the decisions of policymakers and practitioners, disconnected from support systems and services, and disempowered from finding local solutions to the problems that they face. In this House this afternoon we have an opportunity to address that issue. We will have the opportunity to do so again in the weeks and months ahead as the Government take forward their own legislative programme, particularly in relation to the children and families Bill. Today, however, we can ask Her Majesty’s Government to ensure now that the policymakers act not only on this report but on the whole body of evidence that has gone before—a body of evidence that goes back many years, including the period in which I was in government, when we, too, as a Government, had no reason to be complacent about this issue but where some progress was made.
I believe that we will hear the reality reflected in your Lordships’ contributions to the debate this afternoon—contributions that represent a body of unparalleled expertise in this field, for which I am particularly grateful. It is important that we read in the report about the experiences of the black and minority ethnic communities in all parts of the United Kingdom, that we learn about good practice, that we hear and receive the recommendations from the focus groups that contributed to this report, and that we hear and learn from the voices of those people who all too often are unseen and unheard.
We are grateful to Scope and to the Equalities National Council, which is itself a black and minority ethnic voluntary sector body and a centre of excellence in this field. We find from this report that we are confronting, as a country, what amounts to a demographic disability time bomb because the black and minority ethnic population is both growing and ageing. We learn that there are at least 1 million disabled people from black and minority ethic backgrounds in our country. Some 40% of those people live in household poverty, compared with 32% of all disabled people and 17% of the population as a whole. Only four in 10 of black and minority ethnic disabled people manage to find any employment at all, and 40% of those are self-employed or part-time employees. The incomes of those individuals are 30% lower than that of the rest of the general population, with half earning less than £240 a week.
This is not primarily a debate about resources but I would argue that these issues cannot be considered in isolation from the current context of the delivery of services. The issue is not about restraints on resources; we all understand that they are part and parcel of today’s reality and we have to live with that. Nevertheless, the reality is also that these restraints on resources are falling disproportionately on the most vulnerable in our society. We know from the work of, among others, the Afiya Trust that the equality impact assessments on social care budgets are all too often disregarded and that public sector equality duties under the law are flouted. The reality for those small black and minority ethnic voluntary organisations, which play such an important part in the care of the most vulnerable, is that they are suffering disproportionately from the impact of local authority cuts. In 2010-11, £3 million was cut from the sector and £1.5 million from London alone. One in five local authorities does not actually collect any data at all on black and minority voluntary sector organisations.
The question that one puts to the Government today is: will they confirm their commitment to public sector equality duties? Will they reassure the House that the Red Tape Challenge will not be used to water down a commitment to equality? We must also ask ourselves, and ask the Government, what steps are in fact being taken to ensure that their disability strategy reflects the special needs and concerns of black and minority ethnic disabled people. Will the Government meet representatives of the Equalities National Counciland Scope to receive their input? A commitment was given on a previous occasion in this Chamber by the noble Baroness, Lady Hanham, that there would be
such a meeting. Despite requests from both Scope and the equalities council, no such meeting has yet taken place.
Do the Government intend to respond positively to the UN recommendation, endorsed in this report, that there should be a national equality strategy? All the signs and indications from the Government to date have been that they do not intend to embrace the need for such an equality strategy. However, if an equality strategy is not to be introduced, how are the various strands across different sectors and different government departments to be pulled together? Will the promised disability strategy be backed up by an implementation plan, with a focus on measurable outcomes and a means of monitoring progress?
Will the Government clarify their approach to translation services? There again, we have had conflicting signals from the coalition. On the one hand, the spokesperson in this House very rightly affirmed her belief, based on her considerable experience of local government in the Royal Borough of Kensington and Chelsea, that translation and interpreting services have a very important role to play in the delivery of care to black and minority ethnic communities, yet the Secretary of State for Communities, no doubt concerned about resources, described such services as “divisive”. How can this be, given all the evidence, which is contained again in the report?
One example given was of a tape to describe the symptoms of and treatment needed for multiple sclerosis. It was given to an elderly, non-English-speaking Asian woman in relation to the diagnosis of her daughter and it created tremendous fear, concern and apprehension because it had not been translated very well. These services are absolutely crucial to ensuring that there is proper diagnosis, care and treatment. Will the Government clarify the situation and give service providers and users the reassurance that they seek?
All these questions speak to an issue that goes to the heart of how we care for one another in society. Yes, of course it is important that special needs are met and that we address those issues, so well articulated in the report we are considering, as they affect black and minority ethnic communities. However, the reality is that when the needs of one section of service users are consistently overlooked, it is the quality of service to all that is undermined. We are genuinely all in this together—whatever our race, colour or language and whatever the level of our abilities or disabilities. Responsive, respectful and relevant services, made accessible and inclusive, are to the benefit of us all, regardless of our race, background or relative abilities.
What the Government will hear today will not be special pleading; it will be a call to action for a decent society, one in which we can justly take pride. Last year, in the Olympics and Paralympics, we celebrated our diversity. We took pride in it; it said something important about us as a nation. Yet the reality is that when the celebrations have subsided, for all too many of our fellow citizens disadvantage and inequality remain a fact of life. There is disadvantage, inequality and an inability to access the services that they so desperately need.
I hope we will see in our House’s response to this important report, and in the Government’s response, a determination in this new year to resolve to translate the evidence, which is there for all to see, into policy and action so that we can celebrate good practice and a society that is truly diverse—and one that recognises the huge potential that is lost when we fail to meet the needs of those who currently are not receiving their due. When we take action to enable and empower all of us in our God-given and precious diversity, then we really do have something to celebrate. I beg to move.
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Baroness Browning: My Lords, it is a great pleasure to follow the noble Lord, Lord Boateng, who has brought this very important report to the Floor of the House today. At the beginning, I refer Members to my interests in the register concerning various disability charities.
The noble Lord, Lord Boateng, has outlined in his opening remarks some of the core challenges and problems identified by this report, so in the time available to me I would like to focus on some of the recommendations made by the report. I begin with the recommendations for local authority commissioners. It is suggested that there is a need to redesign commissioning contracts to facilitate collaboration between small and large organisations to allow more consistent, wide-ranging care that meets both personal and community needs. This is a most timely recommendation because of the changes that are taking place, as we debate, in commissioning.
It has been my experience that commissioning, whether it is done at a national level by government, by local authorities or through commissioning structures within the health service, almost inevitably follows a pattern. The pattern is usually one where those who are commissioned tend to be larger organisations, for the reason that they are easier to deal with. Larger organisations cover the ground more and the financial control is easier, rather than if the commissioning is based on a lot of small and more independently, but perhaps more accurately, focused and targeted providers.
That is really the challenge in this recommendation in the report. I do not expect the Minister, who will reply to this debate today, to have all these answers, but I will make this request. This is such a timely report at a time of great change for disabled people that if she does not have specific answers to these questions today, I hope she will consult colleagues—this will often need to be across government—on these various recommendations and perhaps agree to put something in writing in the Library. I think that would be very helpful to those of us who are concerned about how practically the Government are going to address the very timely and helpful suggestions in this report.
I turn now to the recommendations related to policymakers in the report. The report states that,
“BME disabled people’s needs and views have often fallen between the two areas of disability and race equality policy. Finding ways to bring these two policy fields together is extremely important for developing effective support for BME disabled people”.
It is almost self-evident that that needs to be addressed, but I think it is a little more complex than the report suggests, because among the disabled community per se there has for a long time been the big challenge of people who have co-morbidities—people with more than one disability. When you bring into that the additional challenge of a range of ages and, as this report addresses, the BME disabled community, you can see that when you look at how you could try to address the needs of those individuals, it is almost inevitable that you will end up with a generic service.
I say to my noble friend at the Dispatch Box today that it is a real challenge to target the services that policymakers produce on individual needs, which will almost certainly be complex. It is a challenge to provide the strategy through the policy as to how to address the myriad requirements of people who have not just one but often a range of disabilities, where two disabilities might mean, for example, someone with an autistic spectrum disorder who also has either a diagnosed mental health problem or a physical disability and is also part of the BME community. Then there are the age concerns to be taken into account.
Of course, when we talk about disabled people, we must think not just of the disabled people themselves but of their family situation. Siblings and the effect of having a severely disabled sibling are extremely important. When you are providing, commissioning and looking at appropriate services, you have to take a more holistic view at the family, the primary carers and, of course—particularly as far as children are concerned—siblings in the same household.
These are therefore complex issues that are not easily resolved, and they are not resolved well at present. We have to do better for this community. I say to my noble friend that in looking at policy-making, some of the recommendations in this report are absolutely critical. These include, for example, a theme throughout the report: involving disabled people themselves, along with their immediate carers, and the BME communities with experience and background in what the needs and solutions are.
Another recommendation for policymakers is the one to develop a national race equality strategy, which includes the needs of BME disabled people. The noble Lord touched on this in his opening remarks. My noble friend will, of course, reply at the end of this debate, but that recommendation was made in the light of the Government’s announcement that we are to expect a forthcoming disability strategy. If it is not the Government’s intention to develop a national race equality strategy, it would be helpful to know exactly what is being done at present—I assume it is being done at present—under the disability strategy. This would reassure the House that this community’s needs are being considered and will be included when that strategy is made public.
There are also recommendations for service providers. A person-centred emphasis is recommended, and I totally agree with that. One can look at a range of disabilities, and there will be a common purpose in the services provided and commonality in the way in which disabilities affect people and in how some particular disabilities, which might be degenerative, are likely to
affect people in the future. One does have to look at the individual; no two people are the same. Service providers should look at the individual and take that holistic look at the individual and their immediate surroundings and life chances.
Employment was mentioned. The figures are appalling for people who could carry out paid work or—and I always emphasise this at this stage—voluntary work. I know this is not the flavour of the month. Everyone is going to be in paid work, but for some people with a disability—and I must emphasise this strongly for my noble friend on the Front Bench—just getting them to the stage where they can maintain independent living is a milestone that many would not have achieved without a lot of support. For some people—and it is only some people—to expect them additionally to take on paid employment could diminish their ability to maintain a standard of independent living that is both safe and acceptable.
We all want disabled people, including the BME community on which this report focuses, to have the opportunity for paid employment wherever possible. However, I am old enough to remember, as I am sure other colleagues in the House today are, when the life chances and quality of life of many disabled people meant that they often lived at home with increasingly elderly parents, the inevitability of which was that at some point there would be a crisis in their care when the parents were no longer able to look after them, so that they, as disabled people, had to face decisions about their future at a point of crisis. That is something which I hope my noble friend will consider.
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Baroness Tyler of Enfield: My Lords, I, too would like to congratulate both the noble Lord, Lord Boateng, for securing this timely debate, and Scope, for producing such a valuable and important report. As president of the National Children’s Bureau—a declared interest of mine—I am particularly keen to draw attention to the compounded disadvantage that children and young people with disabilities in black and minority ethnic communities, or whose parents have disabilities, face to their well-being. Not only do children in general face particular vulnerabilities to poverty, but it is also well documented that disability increases the risk of poverty. When children are additionally members of the black and minority ethnic communities, their well-being risks can soar.
I had a lot of statistics that I was going to go through, but the noble Lord, Lord Boateng, has covered them very well. However, if noble Lords will bear with me, I have one or two points I would like to underline before going on to talk about some more general issues covered in the report. It is vital—the report makes this very clear—that we understand that the disadvantages of disability can be amplified for children from within the black and minority ethnic community. The noble Lord, Lord Boateng, talked about a double whammy. However, if you look at children and young people, and the link with child poverty, as well as the links with disability and the disadvantages faced by black and minority ethnic communities—I am thinking particularly of some black or black British households
and the nearly 60% of Pakistani and Bangladeshi households which, according to Barnardo’s analysis of DWP statistics, were living in poverty in 2011—we are talking about something which is more like a triple whammy for children.
Scope’s very important report, Keep Us Close, also made it very clear that the children of disabled parents within the black and minority ethnic community fare no better. We have already heard from the noble Lord, Lord Boateng, about the very low employment rates for some disabled members of the BME community. Disabled women in this community, who are often the main carers, face incredibly low rates of pay. As we have heard, the median was almost half that of non-disabled adults. None of that will be made any easier with the forthcoming changes to financial support through the new disability addition to a family’s universal credit entitlement. For families receiving the current mid-rate component of disability living allowance, financial support for this group will be halved to £28 a week.
It is against that backdrop that the disabled children we are talking about today will face a range of other problems, which was highlighted well in the report. For instance, in many cases, they or their parents will face language barriers in trying to access the care that they need. Simply put, you cannot know what you do not know. For many in this community, the report has highlighted that language barriers mean that they miss out on services available to them simply because they do not know how to ask for them or what they are entitled to. Scope has also found that members of the BME community are less likely to be represented on some of the forums and committees that make decisions about public services. At these crucial moments for shaping policies and services, the needs of the black and minority ethnic community too often go unvoiced.
A concrete example of a missed opportunity in terms of support faced by disabled children with language barriers can be seen in education. Many young disabled people have a statement of special educational needs guiding their education. However, the report has shown that many black and minority ethnic parents did not know what that was or that they should have the chance to influence their child’s statement at an annual review meeting. Include Me TOO is a charity which specifically supports disabled children, young people and their families from the black and minority ethnic community. It has published a report that found that some parents did not even know their disabled child’s annual review meeting was coming up until it had already happened.
Unavailable, incomplete, or outright incorrect translation services, particularly within medical services, present another challenge to BME parents of disabled children, a point which clearly came across in the Scope report. It highlighted a particular case and asked people to imagine that they were the mother of Anita, a woman who was consulted during the writing of today’s Scope report. Her daughter was diagnosed with multiple sclerosis. Rather than a thorough explanation of the range of MS symptoms, Anita’s mother was given a CD of translated information that merely laid out the worst-case scenario. Quite understandably, that really alarmed and upset her.
In addition to poverty and language barriers, the disabled children of black and minority ethnic communities also face a number of more subtle disadvantages of social isolation and stigma. Again, I thought that the report was very good in highlighting these issues. Perhaps I may pick up on a couple of other examples. One misconception that some members of the community face is that they will have significant family safety networks on which they can fall, although sometimes that is not the case and, indeed, the opposite can be true. The Scope report found strong evidence that social isolation can be very problematic for disabled people from black and minority ethnic communities. Most notably, it drew attention to the experience of women, who are generally the primary carers. A number of BME women who took part in the research highlighted social isolation as an acute problem that they had experienced. One female respondent to Scope’s survey said that when they ask social services for extra support, they are sometimes told, “No. You can do it yourself because you are from an Asian background”. She said that social services think that they have a close and extended family who can look after them, as well as religious leaders. Her view was that that was an excuse for social services not doing what they are supposed to do.
Parents in the BME community also voiced concerns over social stigma associated with their children’s disability. The Scope report highlights the case of a Muslim woman which demonstrates this very well. She felt constantly that she had to defend her son against her extended family’s constant judgment of him as “just a naughty boy”. She said that she was very grateful when her son was finally diagnosed with autism, which she felt gave her a sort of defence mechanism against her family’s accusations that bad parenting on her part was the root cause of her son’s problems.
As I hope I have demonstrated and as the report demonstrates very well, which is why it is so important that we are giving time to this subject today, more needs to be done to bring about a cultural shift in the perception and provision of services for all disabled children and all children of disabled parents—yes, for everyone, but particularly those from within the black and minority ethnic community. These children start well behind the starting line in the race of life from the triple vulnerabilities of youth, disability and minority community status, which then can be coupled with the higher levels of poverty, the language barriers, social isolation and stigma that I have talked about.
The question is: what can we do? We will have an opportunity to do something concrete in a Bill which will shortly be coming before your Lordships’ House. Scope has developed a “provide local principle”, which is designed to ensure that services in local areas are inclusive and accessible and, where services for disabled children do not currently exist, local authorities must guarantee their delivery and ensure that parents and families are involved in their commissioning.
Today, I ask the Government to consider including Scope’s “provide local principle” in the forthcoming children and families Bill as part of the local offer to which they have already committed. The introduction of this principle would do much to improve the services
available to all disabled children, including those from BME communities. Given the will, I am sure that this can be done and I very much look forward to hearing the Minister’s response on this point.
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Baroness Masham of Ilton: My Lords, I congratulate and thank the noble Lord, Lord Boateng, on instigating this debate. It is important that this subject is being discussed today. I have spoken to several people who are involved with disability as a whole and, when I mention the services for black and minority ethnic people with disabilities, not much seems to be known. The Scope report presents some of the evidence and I am sure that your Lordships, like me, will look forward to the Minister’s response.
There are so many disabilities, many of which are complex. I want to add something to this debate which I cannot see in this report—namely, the need for prevention of disability, if possible. Disability can be a strain on families, as it can be very costly and time-consuming. Education for women who are so often the people looking after disabled people is so important.
My admiration has no bounds when I consider the bravery of the schoolgirl shot in Pakistan who was campaigning for education for girls. This outstanding girl would now be dead or disabled if it was not for the medical skill she received in Birmingham, her own hard work and will power, and the support of her family and the Government. That shows how important it is that people work together to help people with disabilities.
I mention today in this debate that the Leeds Children’s Heart Unit is fighting for its retention, as there are a high percentage of black and Asian babies born with heart defects in the area of Leeds, Bradford and West Yorkshire. The north is a special case; it needs units in both Newcastle and Leeds. I cannot understand why the consultants who perform the operations cannot travel between the two units to make the service viable. This would save stress and strain to many families with social needs, who would find long-distance travel too expensive and complicated.
Results show a range of variations between black and minority ethnic—BME—groups and white, British counterparts. Most differences are negative, which indicates that BME groups are less likely to report a positive experience. However, many areas show no difference and some show a positive difference. The research findings show that a source of dissatisfaction was that customers struggled to find out about the benefits available for a long time after they had developed their disabling condition. Many participants felt that it was very hard to find out what they were entitled to and that this applied similarly to all benefits available. Many participants felt that they could have applied for benefits and received help earlier on. This triggered some criticism of the Disability and Carers Service.
Information and forms for disability benefits are far too complicated for most disabled people, let alone black and minority ethnic groups. Language barriers often mean that BME disabled people do not know about, and cannot use, services available to
others. Therefore, it is often disabled people rather than services that are perceived as hard to reach. Communication is vital in accurately translating someone’s condition or disability. Disabilities in communication can result in inaccurate or inappropriate diagnosis. A lack of information in an appropriate language can significantly hinder or prevent access to services and facilities. This is being stressed in this debate.
We must therefore take great care to send out the right information about services and impairment. This could mean simple measures such as using everyday language wherever possible, testing materials with BME disabled people, and refining these materials before publicising. Given the significance of these language and communication barriers, Scope is concerned about the proposal of the Communities Secretary, Eric Pickles, to cut translation services by printing official documents only in English as a way for local councils to save money, which claims that it undermines community cohesion by encouraging segregation. The withdrawal of such translation services will increase the already significant barriers faced by people from BME communities in accessing support. Can I ask the Minister if she understands that this will be most difficult for the growing elderly population of BME disabled people?
The Government have acknowledged the need to develop approaches to meet the specific needs of BME disabled people as part of the Fulfilling Potential—Next Steps paper on their approach to the forthcoming disability strategy. When will the disability strategy emerge? The report found that social isolation was particularly acute for women in BME communities. Many women who took part in Scope’s focus groups said that their impairment compounded the isolation effects on their household and children’s roles, with other family members rarely making adjustments to support the management of their condition.
The stigma attached to disabled people can be widespread and acute. It is far from limited to BME communities, yet Scope’s report found that many people in BME communities felt that it was a particular problem for them. The report also found cases where the most acute source of discrimination was from family members themselves, demonstrating the need to improve attitudes towards disabled people within BME communities. There is a lot for these communities to do to improve their attitudes towards their disabled people. It is possible to change attitudes. It has taken a long time to reach the support and enthusiasm which surrounded the 2012 Paralympics—but it happened. Therefore, I hope that better facilities will emerge for the BME population.
1.16 pm
Baroness Berridge: I, too, wish to thank the noble Lord, Lord Boateng, for securing this debate. I agree with the noble Lord that the Government’s response to the serious issues in this report should be seen as part of the legacy of the Paralympics. It was so wonderful, day after day during the Paralympics, to see the achievements of the athletes and also to see disabled TV presenters such as Ade Adepitan. However, one should not overestimate the effect on our country. In my view, the programming has virtually returned to what it was before. Most notable in this regard was the
hugely popular “BBC Sports Personality of the Year” programme, in which Paralympians were nominated for the award but all three presenters were from the Olympics coverage. However, during the Christmas holidays, I was impressed to stumble across the actor Christopher Slater, who has cerebral palsy and appears in “Tracy Beaker Returns”. I assure noble Lords that this was the Christmas choice of television viewing of my niece, not me.
This is, of course, a report about not only disabled people but also those from black and minority ethnic backgrounds. As I mentioned in my maiden speech, I have had the privilege of getting to know many within the British black community. Therefore, I am not surprised by stories such as that yesterday about Stuart Lawrence, Stephen Lawrence’s brother, who has been stopped by the police more than 25 times. However, I am surprised by the legacy in this area. Often when I talk about these issues I am met with the comment, “You sound rather like the Labour Party”. The legacy here has been the overpoliticisation of the issues around black and minority ethnic communities and racial equality. It is important that these issues are not seen as a matter of left or right, or Labour or Conservative.
It is vital that politicians show national leadership in this area. These issues are complex and nuanced. Leadership is vital so that everyone has the confidence to contribute to the debate. I have also often met people who talk to me about these issues but suddenly clap their hand over their mouth and say, “Was that the wrong word to use? Have I just been racist?”. Usually, I cannot for the life of me identify the word they have just used to which they are referring. Although language is important and racism still exists, this oversensitisation, which we also saw in a discussion on immigration, is helpful neither to free speech nor to resolving the serious matters outlined in the report.
Of course, I have to admit that, in the past, the understanding of my party on these issues has not been exemplary. However, things have changed and continue to do so. Your Lordships have only to wander down the Corridor to the other place to see the number of black and minority ethnic MPs sitting on the Conservative Benches.
Important decisions and actions have also been taken, notably the Mental Health (Discrimination) Bill of Gavin Barwell MP, the removal of innocent people from the DNA database and the emphasis on the need for adoption and fostering of black and minority ethnic children. These are changes to key areas where black and minority ethnic communities have been disproportionately affected for too long. However, these should not be party political issues. I say cautiously to noble Lords that as a Parliament we may have some reflecting to do on accessibility to parliamentary employment and experience. What if you were to lay out the photos, without any further identifying information, of all those who have a security pass issued by a Member of either House? How would we score on ethnic minority inclusion and disability? I am not overly confident in that regard. If lobby journalists have begun to be self-analytical and concerned, as an article in the New Statesman last year indicated, we as parliamentarians should be as well.
I turn to the specific issues in the report. First, it is important to note that the report was issued before the 2011 census results regarding this community were produced. We have seen a rise in the relevant statistic from 8.7% of the people we are discussing in England and Wales having a black and minority ethnic background to a figure of 14% now, so I think it is correct to say that the 1 million BME disabled people mentioned in the report may well be a case of underreporting.
As regards underclaiming of benefits and access to services, much in the report reflects what was reported by the Department for Work and Pensions back in 2010. It is very worrying to read that there is a reversal of the normal maxim that the very poorest are the most likely to claim. Black and minority ethnic disabled people are often in poverty but are not claiming what they need. I wonder whether the Government have thought about trying to enlist the assistance of religious institutions that understand these issues in promoting benefit and service take-up.
An intriguing finding in the report is that there is a lower prevalence of impairments among black and minority ethnic disabled people of working age, but that over the age of 40 prevalence increases dramatically. What are the reasons, rather than hypotheses, for this increase in impairment among members of the BME disabled community who are over 40? I would be grateful to my noble friend the Minister if she would commit to look at the reasons as we could then look at prevention.
As other noble Lords have mentioned, issues arise around language barriers. The report highlights a further legacy: namely, the effects of having placed insufficient emphasis on the need to be proficient in English. Lack of language hampers the ability not only to access services and benefits but to take up many of the opportunities that are available in the UK. Whatever one’s views might be on spending public money on translation, I hope it is not contentious to say that in the future older people who are less proficient in English, and often therefore less well integrated, will require residential care. The report clearly highlights the increased needs of disabled people in black and minority ethnic communities as they age. Can we suddenly expect every person over the age of 55 who has little or no English to learn a new language at that stage? I doubt that. How will residential care homes adapt, given this ageing demographic of the black and minority ethnic disabled population? As schools cater for children with English as a second language, will we need residential care homes that cater for people who speak English as a second language? Have the Government anticipated this matter and what is their response to this ageing demographic issue? We are in the midst of the assessments for PIP, the replacement for the disability living allowance. Are the Government ensuring that language issues are not a barrier here? Will my noble friend the Minister outline the guidance that has been given to Capita and Atos, the head contractors?
It is easy to forget how difficult it can be for people who feel stigmatised, have language problems and are then faced with the language of bureaucracy and end up not claiming what they need. Before Christmas, I
had the privilege of meeting a disability rights campaigner, Jane Young, who I think could give any adviser, even my noble friend Lord Freud, a run for his money as regards knowledge of the changes that we have introduced to welfare legislation. However, what struck me most was how upset she was when her disability meant that she was no longer fit for work, after having always worked up to that point. She exemplified a principle that I think rings true for most people—there are times when you give into the pot and times when you receive. It is a privilege to have paid into a system that supports people such as Jane Young.
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Lord Macdonald of Tradeston: My Lords, I, too, am grateful to my noble friend Lord Boateng for giving us this opportunity to discuss the problems of the estimated 1 million disabled people from black and minority ethnic backgrounds. As he has made clear, the Scope report makes a persuasive case in arguing that ethnic communities in particular are underinformed and poorly served. Their difficulties in accessing treatment are obviously worsened by problems with language, form-filling and bureaucracy and by simply not understanding the jargon of well intentioned specialists.
I strongly support Scope’s recommendation that a network of BME advocates be developed to improve the quality of communication that is so vital in defining medical conditions, patient needs and the nature of the support and treatment available from local commissioners and service providers. As the noble Baroness, Lady Browning, said, very little is simple when dealing with the range and complexity of disabilities, yet what we may experience as frustration and exasperation can deepen into despair for those most in need, especially if they are also socially isolated. Sadly, many of those questioned during research for this report claimed that they were stigmatised and isolated inside their own BME communities.
Of course, disabled people have been, and still are, stigmatised across our society, despite the progress made in recent years and the extraordinarily positive impact of this summer’s Paralympic Games. The Scope report also rightly stresses that cultural differences must be acknowledged and respected. Certainly, we must be very sensitive to them, but we must also be robust in constantly challenging attitudes that are rooted in prejudice or ignorance, whatever the cultural factors that nurture hostility to disabled people across the UK, whether those people are ethnic or otherwise.
Scope is a national disability organisation providing information and support, particularly to those with cerebral palsy. Cerebral palsy is the most common motor disorder, with two or three cases occurring per 1,000 births. In the UK, that adds up over the years to 100,000 or more sufferers. In perhaps 20% of cerebral palsy cases there is also a related condition generally defined as dystonia. Here I declare an interest as patron of the Dystonia Society.
Dystonia is a neurological condition that causes involuntary and sometimes painful muscle spasms as a result of incorrect signals from the brain. Dystonia can affect many parts of the body. The symptoms
include painful twisting of the neck, what we call writers’ cramp, eyes clamping shut, limbs contorting or difficulties simply in speaking or eating. An estimated 70,000 adults and children in the UK have some form of dystonia, of which there are more than 30 different types. The experience of the Dystonia Society may highlight some of the problems that voluntary groups face in relation to those in the BME communities with less common disabilities.
When a disability is little known or rare, the problems of access to treatment faced by black and minority ethnic sufferers are further increased. First, the general lack of awareness of dystonic symptoms is even lower in BME communities. Secondly, since dystonia sufferers often struggle to have their condition properly treated, those from BME backgrounds bereft of support and advocacy risk further marginalisation in the provision of services. However, lack of awareness does not imply lack of importance. Although individual diseases may be rare, collectively they present a major problem for the National Health Service. It is estimated that rare diseases of some kind will affect about 6% of the UK population at some time, perhaps 3.5 million people in total.
On that calculation, perhaps 300,000 or 400,000 people from BME communities will suffer at some point from a rare disease. Unfortunately, many will continue to suffer in silence, undiagnosed and untreated, unless their problems are more actively addressed. Too often we lack the evidence to pin down these problems.
For example, with lesser known conditions, the incidence of dystonia is still uncertain because the epidemiological data are limited. Worldwide there have been some studies that suggest that its prevalence is similar across Chinese, Egyptian and Asian groups studied, but for our BME communities in Britain, such as the Afro-Caribbean community, the data are very limited. It is therefore quite possible that prevalence in some communities is higher than average. For instance, it is known that a gene that causes generalised dystonia—the DYT1 gene—has a disproportionate incidence among Ashkenazi Jews. Despite the good work done by Jewish Genetic Disorders UK to increase awareness of the condition, the Jewish community in the UK is probably not as well informed as that in the United States.
Other problem areas are delays in both timely diagnosis and access to specialist treatment. The average time to diagnosis for dystonia is still longer than three years. For BME communities, we suspect that the delays must be even longer, but again we cannot be sure because no data are available on times to diagnosis. Neurologists who work with groups of dystonia patients also report that participants are very largely white and British born. Similarly, the 3,000-strong membership of the Dystonia Society does not reflect the likely incidence of the condition in BME communities, and ethnic minorities make little contact with our advice line or information website. That is despite the commendable efforts of Dystonia Society staff and the 38 branches to increase awareness and engagement across the country.
The truth is that voluntary organisations like ours, which help those with rare diseases, tend to be too small and underresourced to do effective outreach
work with scattered BME sufferers. The Dystonia Society and others like it would therefore welcome the opportunity to contribute their specialist expertise to, for instance, the national race equality strategy advocated by Scope. We are also keen to work within the new structures of the National Health Service, especially at local level, on targeted information campaigns to build awareness of rare disabilities and to develop more comprehensive databases to ensure fairer access to services.
We should support the call on the Department of Health to provide leadership in improving collaboration among local authorities, the new clinical commissioning groups, service providers and ethnic communities on all disability issues. The Scope report, with its extensive research and cogent analysis, includes a series of other recommendations that seem, at least to me, both practical and affordable. I hope that the Minister will agree.
1.32 pm
Lord Addington: My Lords, when I originally saw the debate I was not going to speak, but then I had a little thought. I am dyslexic and have talked in this Chamber about dyslexia probably far too often. Vested and self-interests have been declared so often. One thing that people who are dyslexic have in common is the great difficulty we have in accessing forms and form-based information on benefits and access to the next point. That is what drew me in, because 10% of the population are dyslexic, a percentage of whom come from black and ethnic minorities. Suddenly there is a group with a double whammy.
If we have to access something by filling out a form, which is how we do it, we are in trouble if we cannot do it. If people do not get the help that is offered—and let us face it, we can all agree that Governments rarely offer money or support services for any length of time if there is no demand or need—we will have problems. If we do not fulfil these needs, as the noble Baroness, Lady Berridge, said, those who need them most will not get them.
An expression that I am far too fond of using, which I shall use again now, is that if you are a disabled person it is generally reckoned that you will do okay if you select your parents correctly. Articulate people who know how to play the system, have good English written skills and can express themselves well in consultations get through well, on average, thanks to the work that has gone on in this place over time. We have embedded culturally the fact that help should be given and have given it legal backing. That is one of the truths of the system. Hence dyslexia is the middle-class disease. Middle-class people who are dyslexic spot it, and decide to do something about the problem. When they cannot get help from the state they usually buy it from elsewhere. Other disability groups have similar stories at certain levels.
We then get to a group that cannot do that. The problems multiply and we end up paying for that in other places. There is low economic activity and a higher prison population in the case of people with dyslexia, for example. Other groups—the hidden disability groups—share this problem, and the group of people whom we are discussing are all paying for the failure to get them out there. Indeed, it has been suggested
that there are more mental problems among people in this group. If we take another group, part of which is in this one, and add the fact that someone cannot communicate well in either spoken or written English, should we be surprised that there is an extra problem when trying to access help that society has decided is beneficial to society as well as the individual? The answer is, of course, no.
The only debate that I had with myself is whether this is an individual cocktail or layers of difficulty each time. That is about as far as it has gone. It is a case of how we get through and how we access help. I am sure that the current Government will not say that we do not want people to access this as it would cost money in the medium term if not the short term, and would be against all principles of fairness. But how will we do it? Translation services are clearly vital to many of these groups, particularly if someone is a new arrival and cannot access the language, either written or spoken. There may be a case for not having translations of every document for everybody.
I would be much more reassured if I heard today that the Government will encourage small, user-led groups to do this work. If cultural awareness and sensitivity are there, they may well do a very good job. Other reports, not even in the pack provided by the Library, show a misunderstanding of what is available and what benefits are supposed to do. Incredibly well entrenched in some of those groups were misunderstandings about benefits, such as: we are not supposed to get them; they are not for us; they will do everything for us; and so on. If that can start to be addressed by using voluntary sectors or the smaller groups referred to, we will start to address the problem reasonably.
We are calling on volunteers to help us on this occasion, but if we can ensure that the Government guarantee that this takes place we will solve many of these problems of communication by making sure that help is there for those who need it and that they get it. This problem is not, of course, totally confined to this group, although the evidence suggests that it is more intense here. Making sure that we identify and bring information to those who need it is very important.
My second point, which will be my last one, is on the Government’s language and the briefing that came from Scope—not the report itself—and the fact that people are very worried about “red-tape equality assessments”, and so on. When sitting on the Benches in front of where the noble Lord, Lord Boateng, sits now, I had to deal with health and safety issues for my party. I came to the conclusion that everybody was against red tape in health and safety until their child was up the ladder. That might be slightly cynical but only slightly.
Something is red tape only when you do not think that you need it—it is just something to deal with. On occasions all Governments tick-box things and all Governments must fight against it. However, if an essential duty is being fulfilled by what is put forward, tick-boxing is necessary. That bit of red tape is needed to hold the bundle together. Unless we can make sure when we talk about this that the regulations are necessary and as simple and as straightforward as possible, we are in trouble.
I am hearing from the disability community an increasing worry about certain statements, such as, “We are going to get rid of these unnecessary regulations”. Can we make sure that we get rid of unnecessary regulations but not the legal duty that is there? That is what we are interested in. We can rewrite and make the regulations simpler and easier to understand, but let us not for one minute suggest that we are getting rid of the legal duty that is required and which most of us agree is essential for ensuring that we have a civilised and fair society.
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Lord Ouseley: My Lords, I thank the noble Lord, Lord Boateng, for introducing this debate and giving us the opportunity to consider the excellent Scope report and the issues contained in it, and bring them before the House to enable the Minister to respond. I also thank him for enabling us to pick up on any other related issues in the area of disabilities as they affect black and minority ethnic communities.
The challenge facing policymakers and decision-makers is to understand the multiple disadvantages being faced by black and minority ethnic disabled people, and to collaborate with community-based and community-led organisations to determine appropriate and effective responses. Following on from what the noble Lord, Lord Addington, had to say, this resonates well with how we involve people who are able to relate to those who have needs and how we help them to respond to these needs at the earliest opportunity.
Where available, the data show black and minority ethnic people having disproportionate adverse experiences of access to income, education and essential support services, in the job market and in utilising public facilities. When we add the disability characteristics, we find that the situation is considerably worse. Increasing numbers of BME disabled people are experiencing discrimination and disadvantages because of a combination of factors, including race, ethnicity, class, poverty, status and where they live. The latter is an important discriminatory feature that we must also consider.
The wide range of disabilities requires appropriate responses, whether the disabilities exist from birth, develop through disease or injury, or occur because of ageing and infirmity. My contribution is particularly concerned with two areas of disability. The first is that which is due to ageing and infirmity. The second regards mental illness. As they advance in age, more BME people are experiencing many forms of disability and impairment. My mother, who is 85 years old, disabled and bed-bound, is in the fortunate position of having care provided for her on a 24/7 basis. My siblings and I are able to make that provision without recourse to external involvement. However, many people are unable to experience that support. Many like her, with similar afflictions and who may not be able to obtain the same level of support, will more likely than not experience a diminishing quality of life in their latter years.
Quality of life and quality of care are essential components of growing old with dignity. As a society
we are currently grappling to find solutions to the cost implications of making appropriate provision for the care needs of a growing elderly population with multiple impairments and disabilities. I have worked in old people’s and adult care homes with people with severe conditions, and I pay tribute to those who are carers. Occasionally we hear stories of where people have been let down by standards of care but on the whole we see in this situation committed and dedicated people helping others, whether in a professional capacity or on a voluntary basis. In the context of today’s debate it is important to acknowledge the work done by BME carers, both within the family setting and in voluntary self-help settings.
As the previous chair of an organisation called the Policy Research Institute on Ageing and Ethnicity, I had the benefit of observing at first hand for more than a decade the significant contribution of BME-led adult care organisations which reach out to BME elders across the country. Considerable work was done in outreach activities to make them aware of the increasing prevalence of dementia, so that the elders could be referred to services at the earlier stage of the condition. This work also addressed their multiple and complex health needs.
This is a good moment to remind the noble Lord, Lord Boateng, that he was involved in helping to launch a study with PRIAE in 1999, Managing Dementia and Ethnicity, which resulted in a film called “Dementia Matters”. The study has been distributed widely among educators and people in the profession.
Without minority ethnic, age or specialist organisations that cater for such groups directly, BME elders with disabilities would remain invisible and, worse, would still not be supported. The challenge for mainstream organisations, including large equality ones, is whether they are prepared to engage with and invest in minority initiatives and organisations. BME communities are part of British society. BME elders with disabilities are British, yet we see the dangers of parallel but unequal services developing, with different organisational resources, funding, capabilities and life spans.
That trend is even more accentuated in the area of BME mental health sufferers. Undoubtedly, in the area of mental health disability there are outrageous disparities. For example, the life expectancy of people from the UK’s African-Caribbean communities who come into contact with services under the Mental Health Act is reduced by a staggering 25 years, as they are routinely labelled schizophrenic or psychotic. Early intervention and culturally appropriate services remain at best sparse and at worst non-existent. There is an extensive body of evidence cited by Black Mental Health UK that indicates that the UK’s African-Caribbean communities are subject to the most coercive and punitive treatment, often with fatal consequences.
Deaths in custody and reduced life expectancy have blighted many African-Caribbean households. It is known that more than 50% of those who lose their lives in police custody are mental health service clients. The same data from the Equality and Human Rights Commission reveal that 20% of deaths in police custody involve black men, who represent less than 3% of the national population.
What is being done to safeguard BME disabled rights? Effective advocacy provision, particularly led by BME organisations, would be an essential requirement to assist in achieving fairness; this at present is lacking. Individuals being treated under the Mental Health Act, whether in hospital or in the community, have the right to access an independent mental health advocate to ensure that their rights are observed and that they are treated fairly. Black patients in detained settings do not have access to effective advocacy. In far too many cases, they are not even informed of this right.
Black Mental Health UK is deeply concerned about the effects of treatment to BME disabled people with mental health illnesses. Black people presented to the service are routinely labelled as psychotic and given high doses of anti-psychotic medication, which come with a raft of side effects that include irregular heartbeat, cardiac arrest, muscle and joint pain, jerkiness similar to the symptoms of Parkinson’s disease, severe sexual dysfunction, rapid weight gain, obesity, diabetes, heart disease and reduced life expectancy. These matters must be addressed as part of any overall strategy, and within the particular context of mental health.
I will raise one final concern: the presence of police, often in riot gear, on psychiatric wards. High-profile death in custody cases have reinforced distrust both of the police and of mental health services. It is necessary that there should be a consistent mechanism for monitoring deaths that occur after police restraint on psychiatric wards. Only in cases where there is a high-profile fatality and the family are vocal about the incident are such matters brought to public attention. It is right that the Minister should respond and say how we will seek to share information in an open and accountable way that will enable those who provide support services for those with mental health illnesses to be made aware of how they can contribute to ensuring that the latter’s rights are safeguarded.
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Baroness Hussein-Ece: My Lords, I, too, thank the noble Lord, Lord Boateng, for securing such an important and timely debate. I also thank Scope for the excellent briefings it made available, and the Equalities National Council for its very insightful report and studies.
There are at least 1 million disabled people from black and minority ethnic backgrounds in the United Kingdom. We know that many face considerable difficulties in their daily lives yet are unable to access the services that they need. We heard in the most recent census about the demographic changes in our society that mean that there will be many more BME disabled people in future. It is therefore important that provision and policies are developed in a timely way for disabled people who rely on these services.
Like the noble Lord, Lord Ouseley, I care for my disabled mother, who is 80 and whose language skills are not very good. She cannot read English very well, despite being in this country for many years. I do not know how she would cope without me. She probably would not be able to remain in her home without my family’s support.
I will talk today about the plight of disabled children from black and minority ethnic backgrounds. I declare a personal interest in the issue; I have a grandson who
has disabilities and special needs. He receives support from a number of excellent voluntary agencies. The report rightly highlights the problem that BME disabled people’s needs and views have fallen between the two policy areas of disability and race equality. Finding ways to bring these two policy fields together is becoming more urgent and important for developing effective support. This is a classic example of how people from BME communities struggle and face double discrimination.
Yesterday I was in Grand Committee, arguing against proposals to make changes to the Equality Act and to the remit of the Equality and Human Rights Commission. The case was made very strongly by many noble Lords that we need to retain a strong and robust commission that retains its general duty to promote work that enables disabled people, as well as people from other protected groups, to participate in society with dignity. That phrase came across quite strongly yesterday. The commission should also retain a duty to promote and encourage favourable treatment of disabled people and to work towards eliminating prejudice and hate towards disadvantaged groups, which include disabled people from BME communities.
The noble Lord, Lord Boateng, asked an important question about the Red Tape Challenge that I will repeat because it is so important. When it was launched, I was very concerned that the Equality Act, a piece of primary legislation that affects the lives of so many people, was included in its remit. Will the Red Tape Challenge be used to reduce the public service equality duty? This is exercising and concerning many groups that rely on it.
Nearly half of all minority ethnic disabled people live in household poverty, compared with one in five of the population as a whole. Overall, we know that families from minority ethnic groups caring for a severely disabled child are even more disadvantaged than white families in a similar situation. Families’ experiences, needs and circumstances vary across ethnic groups.
Carers for people from BME communities are not always aware of the support that is available to them. A key way of addressing this would be for social care services to develop stronger links with local BME communities. I was struck by the case highlighted in the report of Anwar, a 16 year-old boy with complex physical needs and learning difficulties. It is a very good example, and sadly by no means unusual. For several years, Anwar lived alone in an unadapted flat above his family’s corner shop. He had no wheelchair and no way of getting down the stairs independently. He was not in school or able to access any services, and his only contact was with his family. Although they visited regularly, if he wanted to leave the house he had to be carried down the stairs by his brother. It was not until a neighbour told the family about a local support group, which he learnt about having met them at the local mosque, that Anwar’s circumstances changed. A support worker ensured that he was allocated a social services care package, given a wheelchair and eventually rehoused in an accessible ground floor flat, where he is able to live independently. As I said, this is a typical case.
Stigma is also a big issue that affects many minority communities. It can lead to social isolation, with families and carers struggling to cope behind closed doors for fear that they will be made social outcasts and blamed or in some way held responsible for their child’s disability. During my 16 years as a councillor in inner-city boroughs in Hackney and Islington with high levels of disability among BME communities, I spent much of my time on casework when people came to me to raise these issues. Many Turkish families came to see me because they had got nowhere with mainstream services. Because I could talk to them in Turkish, I was able to act as an advocate and try to get the most basic services for them. It was heartbreaking that they had to come to their councillor to get these services. What would have happened had I not been there? That is the test.
The report mentions that it is more usual for Muslim and Hindu communities to face social isolation and stigma. Recently I heard of a Turkish father struggling with his severely autistic child whose behaviour was extremely challenging. His wife had attempted suicide because of the strain of the situation and the lack of support. The father, whose English was not great, was the main carer and was unaware of the support that was available to him to apply for. Thankfully, he was referred to an excellent charity, Centre 404, based in Islington, where a Turkish specialist worker was able to help him apply for additional services such as much-needed respite support. We have heard how interpreting services and advocacy play a key role in this sort of case and in many others. Are the Government encouraging local authorities to ensure that advocacy is available to BME communities and carers? It can make such a difference in enabling a better and dignified life as opposed to an existence.
The examples I mentioned illustrate the reality that the mainstream social care system—my noble friend Lord Addington touched on this—is effectively adversarial. In effect, people compete for services. The most articulate and assertive—or those whose families or carers are the most articulate and assertive—are more likely to succeed and to get the right services. Specialist knowledge and research is also needed into ways of accessing support. For many families and carers from a BME background, it is incredibly difficult to navigate through the system to get the additional support that can make such a difference to their life chances and to their ability to fulfil their potential. Stigma and social isolation are widespread among carers for the disabled from a BME background, especially women.
The report highlights the importance of services operating at local level having close relationships with community groups such as mosques.
One of the key recommendations, which has already been mentioned, is that following the UN Committee on the Elimination of Racial Discrimination there have been recommendations from Scope and other race equality groups that the Government develop a national race equality strategy. I want to underline the importance of this and ask the Minister if this is being taken seriously. These issues urgently need national leadership. Some of the concerns that I and others have raised are that, going by the proposals to reduce
the duties that I mentioned earlier, the present mood music and signals are not encouraging. I will also ask the Minister about equality impact assessments. When producing new policy or legislation, as recommended, will these important matters continue to receive support?
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Baroness Hollins: My Lords, people from BME communities are significantly under-represented in the uptake of learning disability services. This is despite the much higher prevalence of learning disability in certain BME groups. For example, it is up to three times higher than average in some south Asian populations. It is also higher than average in the African and Caribbean community. The number of people with learning disabilities from minority ethnic communities is predicted to increase substantially over the next 20 years.
Research shows that minority groups have a different experience of mental health services and different outcomes from treatment compared to the white majority, as explained by my noble friend Lord Ouseley. The noble Lord’s comments also apply to people with learning disabilities who also have mental health problems. Valuing People Now, the Government's three-year strategy published in 2009 for people with a learning disability, spelt out the changes needed to make sure that the most excluded groups would benefit fully from health and social care services. I agree with many other speakers that failing to take into account differences in race, religion and cultural identity is the same as ignoring the needs of what can become a vulnerable and excluded group.
Black and minority ethnic groups have been shown to be at increased risk of mental health problems and those from black communities are more likely to be admitted to hospital than those from other ethnic groups. There are various reasons thought to contribute to this increase. For example, for first generation migrants, the actual event of migration is often a traumatic occurrence with major disruptions to family and other lifelong attachments. Many have difficulties adapting to a new culture. Migration is in itself a risk factor for psychiatric illness, particularly psychosis. However, following migration, communities can experience other challenges and insults that can further predispose them to mental health problems and subsequently maintain them.
Some have uncertain asylum status, living in limbo for several months or years while their application is considered, and rejection of asylum may lead to significant mental health problems. Although 90% of asylum applications made in the United Kingdom are rejected, the majority stay on, often because they have no passport or their country of origin will not take them back. Those allowed to stay have the same rights as citizens, but the experience of earlier traumatic events, coupled with new problems related to acculturation, may impede their uptake of services. Several studies, including one by the Leicestershire Learning Disability Register, found that people with learning disabilities from minority ethnic communities have similar levels of mental health and behaviour problems, but that their carers experience significantly more stress and
receive less support than their white European counterparts. Low household income and more than one person with a learning disability in the household were also associated with high carer stress. It is perhaps significant that one study found that 19% of south Asian families have more than one child with a learning disability.
Differences in perception of mental health within various cultures and poor knowledge of availability of services can also significantly influence the health-seeking behaviour of people who have mental health problems and individuals with learning disabilities or their families. Some of these barriers are easier to overcome than others. Some take time and dedication and a truly person-centred approach—no two service users are the same. All available research shows consensus in terms of a lack of awareness of services being a major barrier to people from minority ethnic communities accessing care. Mencap and the Institution for Local Government found that families and carers from BME communities knew little about the services they could use or how those services operated and what their rights were. Information about services was so often found to be inaccessible and not in the right language. Language and communication difficulties present problems for potential service users and their families in terms of accessing and using services. Often clinicians have to rely on a family member to interpret and this can lead to further problems in terms of confidentiality and disclosure of information, which may be particularly concerning if there are safeguarding issues.
It may also be the case that family members who interpret select the information they want to disclose, thus withholding important information. When I was acting in clinical practice, I certainly had that experience. Even when professional interpreters are used, families may be hesitant to disclose personal or sensitive information via an interpreter from that same small community. Cultural factors and belief systems may have powerful influences over how families respond and may have significant impact on how or if support is sought. Some cultures may have different ideas about the cause of a disability and choose to seek more traditional healing methods. They may not be interested in exploring western medicine or western educational, psychological or rehabilitative programmes. They may even misunderstand the concept of learning disability and expect a “cure” for their family member's problem.
Research by Mencap showed that many families and carers feel isolated and powerless. A common misconception is that people in BME communities get a lot of support from extended families—which sometimes they do—and therefore need fewer services, such as respite. One professional working in learning disability support within a predominantly Bangladeshi community said:
“The shame and taboo surrounding learning disability makes it difficult for mothers to get help and support. They get little practical support from their families and little emotional support either. The situation is so bad that mothers are more likely to seek help from agencies that are outside their community rather than from Bangladeshi specialist agencies”.
Family roles and dynamics vary greatly across different cultures. Within some cultures, family structures and
relationships are hierarchical and women can have a very different role from that in western cultures. Consanguinous unions may be acceptable and commonplace and may contribute to the increased prevalence of learning disability and other severe disabilities. If there are clashes between the views of families and professionals as to which decision is made in the best interests of the patient, a family may subsequently avoid engaging with services. A colleague gave me an example: she was requested by the forced marriage unit to conduct a capacity assessment for consent to be married. The man was a Pakistani gentleman with moderate learning disability who had been taken to Pakistan a couple of months earlier to be married. Although the man was clearly very fond of his wife, he had little understanding of the concept of marriage or of sexual relationships. His parents believed that the marriage was in his best interests and my colleague formed the view that interference by professionals would have caused great conflict between the family and services, and possibly resulted in future non-engagement with professionals.
Currently, many services lack appropriate provision for people from BME groups with learning disabilities. They may be culturally insensitive, not taking into account issues such as the gender mix of services. Many families prefer their disabled female relatives to be cared for in a female environment. Other services perceive BME communities as a homogenous group and may not take into account the many differences found between different communities and fail to identify service users as individuals with their own set of unique needs. There are many incidents of people falling through gaps in the care system. For example, the eligibility criteria used by services mean there must be a clear history of developmental delay. However, such histories are often not available in first generation migrants and problems in language and lack of educational opportunities in their country of origin makes such assessments even more complicated and sometimes invalid. People may be lost as follow-up, due to frequent changes of address during transition from child to adult services. Improving services requires a considerable amount of flexibility from providers in order to engage with the various minority communities effectively.
I want to end by thinking about the importance of cultural competency as an essential component to our services. I hope the Minister will agree above all that a person-centred and culturally competent approach will be key to the success of services in the future.
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Baroness Benjamin: My Lords, I, too, congratulate the noble Lord, Lord Boateng, on securing this important debate and on his excellent speech highlighting disability issues, which are causing major concerns to the black and ethnic minority communities across the country. These concerns of inequality and the lack of understanding of needs are clearly outlined in the Scope report, as we have heard throughout the debate.
I should like to concentrate on one particular area covering those who suffer from sickle cell disorder. I declare an interest as a patron of the Sickle Cell
Society. My contribution is based on evidence-based statements from experts, which are the experiences, opinions and views of the Sickle Cell Society’s stakeholders—that is, the professionals, service users and user groups from within the networks of the Sickle Cell Society and the UK Thalassaemia Society.
I was dismayed by the relevant evidence sent to me which expressed the frustration faced within the BME community by those suffering from sickle cell and the challenges posed by the appalling response in addressing the needs of BME people living with disability.
Sickle cell disorder is not a visible disability but its nature affects patients almost from birth and then has a marked social impact, including an inability to work, early death, stigma attached to disability, the need for repeated, unexpected admissions and a severe reaction to opiates, which are often given in error by medical staff, who in many cases are unfamiliar with the condition.
There are a number of key issues that I should like to cover which I believe will show just how necessary it is for action to be taken and for urgent consideration to be given to sufferers with this disability. BME people living with sickle cell suffer from the specialised nature of the disability that is unique to sickle cell sufferers. As I have said, the disability is invisible and varies between and within individuals. Feedback from the sector clearly identifies that those conducting the statutory assessment of disability need to be aware of these issues. A report by those dealing closely with sickle cell sufferers concludes that those with the condition almost always fail the initial statutory assessment that channels candidates through the Government’s Fair Access to Care Services, which is required for most disability welfare support entitlements.
Research has also shown that an inhumanity impact is experienced by sufferers. The loss of welfare entitlements is increasingly reducing people with disability as a result of sickle cell disorder to exist in inhumane living conditions. This social justice failure is a serious indictment of our society. Evidence also shows that such is the stigma of disability that some people would rather not undergo the ordeal of the label, despite the benefits to which it may entitle them, assuming that they are able to successfully brave the challenging FACS assessment.
There is also an NHS cost impact because, as a result of wrongful assessment under the FACS test, sufferers are forced to depend on acute hospital services, with huge cost implications for the NHS budget.
Prescription charges are another big issue that have a profound effect on sickle cell patients. A regular supply of medication is crucial. Evidence shows the beneficial effect of hydroxycarbamide medication in reducing the number and length of hospital admissions in this patient group. This clearly represents NHS cost savings as well as increased patient life expectancy. However, because of high prescription costs, many patients decline medication or frequently run out of supplies, making treatment ineffective and resulting in costly A&E attendances and hospital admissions. This is because the severe nature of the disease and complications may result in prolonged admissions, exchange blood transfusion and costly intensive care.
I ask my noble friend the Minister whether the Government will consider the idea of all sickle cell patients being exempt from prescription charges. The number will be small as, of the 12,500 sufferers, 60% are children and some of the adults are on welfare benefit, so it will mainly include those in work, who are often low paid or part-time owing to the nature of the disorder and its impact on their ability to study and work full-time.