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House of Lords

Friday, 14 December 2007.

The House met at ten o'clock: the LORD SPEAKER on the Woolsack.

Prayers—Read by the Lord Bishop of Salisbury.

Disabled Persons (Independent Living) Bill [HL]

Lord Ashley of Stoke: My Lords, I beg to move that this Bill be now read a second time, in both senses—in the parliamentary sense of a Second Reading and in the sense that this is the second time that the Bill has been before the House. As noble Lords will know, it is the same Bill that was passed by this House last April. It was subsequently introduced in the House of Commons by Roger Berry but ran out of time there. The Bill is a high priority for those of us concerned with disability. I declare an interest as a disabled person, so there is a certain self-interest in this Bill being passed by both Houses.

Those of us who are interested in disability issues intend to make them a high priority in this country. Without that we will get nowhere, but with public support we can make progress. We are determined that this Bill should become law. It may not happen now, but it will definitely happen. A Government who support the Bill will find themselves in good favour in the country. They have been warned that if they reject this Bill or do not bother with it, somebody else may take up the cudgels.

I thank Caroline Ellis of the Disability Rights Commission for her magnificent help, work and support on this important Bill. I warmly appreciate it, as do millions of disabled people around the country. The Bill includes many things and all claims for it can be verified. It is a rescue operation for the victims of the worsening crisis in social care. It is a blueprint for the future, compensating for the many short-sighted policies and practices. It is a Bill that seeks to end the misery inflicted on disabled people and their families by an antediluvian system of care that is restrictive and inflexible.

The need for reform grows more urgent every day. It is staggering that three-quarters of councils are now refusing to support people with moderate needs and at least four councils provide support only if the person would otherwise die. You have to be dying to get any kind of help from councils and, of course, if you die it is no help anyway. Three-quarters is an outrageous figure. Unless you are dying, you need not bother applying. Those are the facts in Great Britain. Without support, people are left to deteriorate, carers cannot work and families are put under strain.

Pilots, reviews and warm words from Ministers are not what people want or hope for. They want a new law that gives them clear entitlements and guarantees them a chance to live an ordinary life contributing to their community. They hope that the Government will seize the opportunity offered by the Bill to bring

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about a real and lasting change. The House will listen with great care to the Minister who winds up. We are hoping for something that is positive, constructive and definite. Disabled people hope that the Government will seize the opportunity offered by the Bill to bring about a real and lasting change. If they do not, they must take the consequences, as we intend to make social care a high priority.

I remind the House of the main points of the Bill. First, it provides a set of guiding principles for the delivery of public service support to disabled people. It would prevent the everyday abuses of dignity and autonomy that we see today. Nowhere in the existing pattern of community care provisions will we find any reference to choice, control, dignity or equality. Disabled people are as much entitled to those as anybody else, but social services departments routinely make decisions that contradict those fundamental values.

The Bill would get rid of fragmented services and bewildering bureaucracy. It would place local authorities, National Health Service bodies and other key partners under a clear obligation to promote independent living. This goes hand in hand with greater strategic duties to co-operate and pool funds. Under this scheme, disabled people would be relieved of the nightmare of negotiating with a bunch of different agencies to try to get their needs met.

The Bill empowers disabled people to assess their own support needs, supported by an advocate if they need one. This gives every disabled person the right to be told up front what resources they are entitled to and to plan their own support package. It gives people a real choice between managing their budget with practical assistance, placing it with a trusted person or organisation to manage on their behalf or taking statutory services in lieu of cash. These are important changes.

Some councils only feed and clean, nothing else. In place of the insulting feed-and-clean-only approach, the Bill provides for holistic entitlements to support that extend beyond personal care. Disabled people would have clear rights to support for mental health and communication needs and for rehabilitation, as well as rights to support in bringing up children. These are things that the Government have pledged to deliver for disabled people by signing the United Nations disability convention. We thank the Government for that, but the catch is that they have yet to enshrine that in law. There is no point in saying how clever we are in singing the declaration if it is not legally binding, so the Government may be wasting their time if they do not pursue this further and make it mandatory. We want the law. I ask my noble friend the Minister, who I see is listening carefully, when disabled people can expect the Government to enshrine these provisions in law. It is a positive, constructive step, which I fully expect the Government to take without hesitation.

This new framework provides for national minimum guaranteed entitlements so that postcode lotteries are eradicated. To make freedom of movement a reality for disabled people, the Bill provides for portable support packages. With these, disabled people can move from one local authority to another for jobs or family reasons without the uncertainty of having to

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undergo reassessment and renegotiate a support care package from scratch. That happens. People who want to move for any reason find themselves having to negotiate each provision with different local authorities. Imagine all those bureaucrats lining up to tell you what you can and cannot have. It is a nightmare. The Bill would definitely eradicate that. I hope that the Government accept that without any discussion at all.

The Bill also fills the glaring absence in law of effective protection against unnecessary institutionalisation. This is an important point. It would be unlawful to institutionalise—a hell of a word, but you know what I mean—a person against their wishes or on grounds of financial expediency. For those in private and voluntary sector care homes, the Bill provides the full protection of the Human Rights Act.

A decent home is at the heart of independent living. The Bill places a duty on local authorities to establish disability housing registers to ensure that they make more efficient use of existing adapted or accessible stock and provide disabled people with real choice. All new homes would be built to lifetime home standards and an appropriate proportion of new homes would also have to be built to full wheelchair accessibility standards. Although we have not decided on a proportion yet, we will eventually decide on an effective and reasonable figure. That is important.

The benefits of the Bill extend not just to disabled people but to carers and whole families. The Bill would end the scandal of children as young as five carrying out adult support roles for their parents because the parents are so badly handicapped. That is a fact of life. Adopting this policy would free hundreds of thousands of carers to rejoin the labour market and enable women carers to find a way out of poverty and build up a decent pension.

I assure Ministers and their advisers that I am well aware of their objections to the Bill. I do not seek to brush those objections aside, although I do not agree with them. After all, we are all on the same side in wanting a fair deal for disabled people without massive expenditure. However, that does not mean no expenditure. Nothing in this Bill can be accomplished overnight or implemented all at once. I recognise that and the difficulties facing the Government, but we must begin to make positive advances now. We can and must begin a dialogue on the contents, timing and phasing in of the Bill. If the Government seek to get away with a blanket refusal, they are heading for serious trouble, but if they begin discussions, we will be on our way, seeking sensible solutions to long-standing problems that are damaging disabled people and causing increasing difficulties for the Government. Those difficulties will increase enormously if the Government give negative answers to these requests.

The Government have reservations about legislating for independent living. They say that they are not convinced of the need for new law. That is a ridiculous statement. They are surely aware of the leading community care law experts who say that the law is a dreadful mess. Even senior judges, the most cautious men in the world, express dismay at the law’s

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complexity and obscurity. All the major stakeholders in this debate, including the Local Government Association, believe that the time has come for root-and-branch reform. That is precisely what is required, not a bit of tinkering here and there, which the Government have been advocating for some time in the hope that they will not have to reform the law after this debate.

Ministers have also expressed concern about timing. There is more than adequate evidence of the benefits and feasibility of key provisions for us to move ahead confidently. These, such as self-directed support, are just waiting to be implemented. Indeed, the message coming from all parts of the Department of Health—I know that my noble friend the Minister is not from that department—to local authorities appears to be, “Please get on with self-directed support and individual budgets”. However, the Government are not providing the necessary duties or legal framework, so I hope that they will change their mind on that.

If the Government deny the need for urgent reform, this will become a long battle of attrition between us. However, I hope to elaborate, perhaps in Committee, on what I think would be a workable timetable for implementing the Bill. It cannot all be implemented at once; I recognise that there must be a staged process. That is particularly important, as it will be implemented in the context of the current, extremely tight financial settlement. I recognise the Government’s difficulties on that. We cannot work miracles overnight, but I hope that we shall start with miracles and move on to the major miracles. As I said, if the Government deny the need for urgent reform, it will become a long battle of attrition. I hope to get together with the Government to discuss the tight financial settlement that they are faced with and the way forward.

I am glad that the Minister is listening to this because cost is a crucial element for the Government. They have failed to deliver the kind of investment for which people are screaming out in social care. The Comprehensive Spending Review was a bitter disappointment. Apart from some positive pledges on short breaks for disabled children and their families and greater access to psychological therapies, there was precious little to rejoice in. A derisory 1 per cent increase in local government funding and a rise of just £190 million in adult social care funding from the Department of Health were announced. Frankly—and we need to be frank—the Government have failed to respond to the crisis.

I have spoken for far too long, but I shall say that I hope that we may convince the Government of the benefits of investing in independent living. The Office for Disability Issues, an independent organisation, clearly understands those benefits and has done some excellent research showing the huge economic benefits of radically transforming the system. The money can be saved; it is there, if the Government act properly. The more we invest in independent living support, the bigger the economic savings will be as more people pay taxes and come off benefits and fewer people need acute healthcare. Why on earth

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have the Government disregarded this research? We do not need a massive injection of investment to get the reform process under way. The very process of transforming public service support for disabled people and their families in the manner set out in the Bill will free vital resources to tackle unmet needs. It is to some extent a question of redirecting resources to secure better outcomes for disabled people.

Stakeholders interviewed for the cost-benefit study commissioned by the Office for Disability Issues suggested that no less than 20 to 30 per cent of social services expenditure is wastage because it goes on inflexible block contracts and inflated agency fees. If we tackled that by implementing the Bill, the savings would be in the region of a staggering £3.8 billion. That is the amount that Derek Wanless said would be needed to extend support to 450,000 older people. Similarly, the Government have estimated that reducing the rate of institutionalisation among older people by just 1 per cent would save a further £3.8 billion, so the Bill’s provisions would save money and make it available for the Government to use in different ways.

I am sorry to have gone on for so long, but this is an important Bill. It is a blueprint for the future and will be acted on sooner or later. The sooner the Minister is able to act on it, the better for all concerned. I commend the Bill to the House.

Moved, That the Bill be now read a second time.—(Lord Ashley of Stoke.)

10.24 am

Baroness Masham of Ilton: My Lords, I congratulate the noble Lord, Lord Ashley of Stoke, on his unremitting pursuit over the years for better facilities for disabled people. I am sure all noble Lords will agree with the aim of the Bill that:

As a disabled person—I broke my back in 1958—I must declare an interest.

I was married for 46 years to a wonderful husband who had many serious health conditions in the last 11 years of his life. They included diabetes, strokes, DVT in his leg, a bleed in his head, an embolism in his lung, Parkinson’s disease, a cancer tumour in his lower bowel and an open wound that had to be dressed twice a day. I therefore know only too well what support and help some disabled people need if they are to remain in their own home, which is the wish of most people.

I shall restrict my remarks on the Bill to the clauses dealing with health matters, and I hope that the Minister will listen to some of our pleas that the Bill gives us the opportunity to air. Clause 7 is entitled:

and it mentions palliative care services. They are still very patchy across the country.

When my husband became ill with pneumonia, I had to deal with the out-of-hours doctor service. He started running a temperature, and I dealt with three different doctors, all 26 miles away. One came out on

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Saturday and prescribed an antibiotic. As my husband had difficulty swallowing, we had to chase from chemist to chemist to find one that had it in a liquid form. On Sunday, my husband was worse, and I telephoned again. It was hours before the doctor telephoned back; the out-of-hours vet service would have been much quicker. By the afternoon, my husband had to go to hospital, and he died in the A&E department of Harrogate General Hospital. For seriously disabled people, this must be improved. The NHS is very fragmented. I know it is better in some parts of the country, such as Cambridge where, I am told, seriously at-risk ill patients are put on a register so that the out-of-hours doctors know about them. This is something that PCTs could improve greatly. In my husband’s case, there was no way for the hospital to get his notes. I mention that as I want it improved so that other people do not to have to go through what I went through. My fear is that as PCTs cover such large areas, the service will get even less personalised and more fragmented.

Last week, I attended a conference on cancer where I heard about the hopeful development of community palliative care in Lincolnshire, but it is a drop in the ocean. Clause 5(1) states:

I bring to your Lordships the most worrying Department of Health proposals on Part IX of the Drug Tariff: cuts in patient services and reduced access to prescription products. As the president of the Spinal Injuries Association, I can say that this is a concern of many of our members, and of many people who have had or have cancer and have to use catheters and stomas. These are essential products. Specialist products allow NHS patients with complex conditions to lead a near-normal life and maintain their independence. Appliance users can continue to work and contribute to society. Access to advice via specialist nurses and telephone helplines is vital to support patients’ self-care, as promoted by the Government.

The Department of Health’s proposals will lead to the withdrawal of large numbers of specialist appliances. People who have used specialist products to live independent lives for many years will face distress and disruption if their prescribed product is withdrawn because of price cuts. The department proposes to place a cap on the number of specialist nurse visits and stoma customisation which will be funded. This is a very small service that can help so many, and to cut it is ridiculous. The services ensure that patients are provided with the right product, which is individually tailored. If this is halted, clinical complications or infections may arise with serious implications for patient health and NHS resources. The saving that the department is trying to make is a tiny proportion of the total NHS budget and the overall savings target, but the most vulnerable patients will suffer.

Patient groups, healthcare professionals and the industry have expressed serious concern about the impact of the department’s proposals. They urge the Government to ensure that their proposals do not lead to products being withdrawn or services cut back.

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Many of these products are provided to patients in their own homes by the home delivery service. That is a most useful advantage to everyone concerned. I ask the Minister to help some of the most disabled service users in this matter. The department’s plans are laid out in a review document that is out for consultation until the end of December—this month.

As many of our paralysed members get older, there are increasing difficulties in shoulder and wrist movements, with overuse. There are increasing difficulties with bladder and bowel and the skin gets thinner and more vulnerable. They need more help to continue to live independently.

Many disabled people are very much at risk when they have to be treated in hospital from picking up infections such as MRSA or Clostridium difficile. I personally know two people who have been in hospital in the past year and have both had C difficile and MRSA. One is the brother of one of your Lordships. He has had cancer and it is a miracle that he is still alive after having had MRSA and C difficile twice. Neither of those people is old.

The Bill is intended to allow disabled people to enjoy personal dignity. It should be everybody's aim to strive for this. When one hears of patients being treated roughly by nurses or care assistants as they are moved in agony while in hospital, one wonders whether the nurses know about TLC. When food is left and taken away because nobody has ensured that the patient is fed, when fluids are denied to a thirsty patient, when patients are left for hours in a soiled bed, when nurses talk over patients, where is the dignity? When nurses are more interested in planning their nightlife than talking to their patients, it is put down to the modern generation, but with more hands-on training and supervision by dedicated sisters, we could have better nurses.

Too many sisters have been submerged in administration, which could be done by ward clerks. Patients, especially disabled ones, should not have to suffer with swallowing difficulties. The discharge of disabled patients from hospital should be well planned, not left until the last minute. Perhaps the national framework for NHS continuing healthcare and NHS-funded nursing care will help in this matter.

The Bill encompasses such a diversity of people with all sorts of disability, and impairments. I am so pleased that it stresses choice as one of its priorities. Where there is choice, one is most likely to get a good standard of care and support. I am not sure that this will be easy to achieve in some rural areas, but there is a great deal to aim for. The existing system does not provide rights to portable support. If you move to a different part of the country, you have to start all over again and negotiate a new care package from scratch. As provision is so patchy across the country, with a postcode lottery still in place, I can see why that happens.

As I find that mental illness can be difficult and patients can be a danger to themselves and others, I ask the Minister: do people with mental health problems have no right to assessment or treatment and support for their mental health needs? A high

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proportion of mental health service users are denied an assessment for social care services unless they reach a high initial threshold of serious mental ill health. If they are denied an assessment, how can that be proved one way or the other? I do not understand that and I hope that the Minister will explain it.

The Bill is giving much food for thought. I hope that, whatever the life of the Bill will be, it has already shown that there is a great deal to do if improvements are to be made.


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