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4 Feb 2009 : Column 286WH—continued
Those communities often face social and economic disadvantages, and in the past many have struggled to find a voice within the health service. English is not the first language of many parents of children born with thalassaemia, which makes access difficult. Often families have to navigate the complications in the health and education systems. The lack of access to appropriate treatment and care for thalassaemia patients can contribute to the health and social inequalities that many patients and communities already face. This ethnic profile makes the spread of thalassaemia patients across the country
uneven, which means that primary care trusts in certain areas, such as London, Birmingham and Manchester, face a disproportionate number of thalassaemia patients. That creates a number of problems with the burden on resources among PCTs with a high prevalence of thalassaemia. For low-prevalence PCTs, the cost is lessened, but patient access to specialist services is often patchy. They are required to travel long distances to access services.
To overcome problems of disparity in care in other conditions, particularly where patient numbers are relatively low and patients require a package of specialist care, the NHS has responded by developing managed clinical networks with the aim of improving cross-boundary working between health professionals and organisations in order to achieve the desired equitable provision of high-quality, clinically effective services. The UK Thalassaemia Society has produced guidelines on the standards of care for the treatment of thalassaemia patients, with the assistance of leading clinicians. Central to achieving those standards and improving outcomes is the establishment of clinical networks. Clinicians hope that if those clinical networks are established, the service for patients will improve. I understand that for the past two years the Government have been developing clinical networks for thalassaemia and sickle cell, but sadly there is no evidence that they are functioning and delivering the desired service. I would appreciate it, therefore, if the Minister outlined a time scale for the implementation of her Government’s plans for clinical networks.
Variations in treatment and care between PCTs and hospital trusts come particularly to the fore in the provision of certain drugs. This is a familiar theme that no doubt has been the subject of other Adjournment debates secured by other hon. Members. The case of thalassaemia is different and particularly pertinent because it affects the whole package of specialised services, the provision of which varies widely between different PCTs. There is not just a disparity in drug treatment; the whole service is often lacking. Patient numbers are low, but unlike many other conditions the ethnic profile of the people affected means that prevalence is not evenly spread through the population, and often patients must contend with the other inequalities that I have mentioned already.
Furthermore, mechanisms such as clinical networks and specialised commissioning, which exist in the NHS to deal with other conditions, as I have pointed out, requiring similar levels of specialised services for smaller numbers of patients, are undeveloped for thalassaemia and other haemoglobinopathies. Will the Minister explain why thalassaemia remains a poor relation to other genetic conditions, such as cystic fibrosis, in terms of funding for specialist drugs, the provision of services and general recognition? Will she explain when the Government will implement the clinical networks for thalassaemia to improve care and reduce variation in provision? What will the Government do to ensure that oral iron chelation treatment is made available to all patients?
The Minister will be aware of the forthcoming prescription charges review for patients with long-term conditions being undertaken by Professor Ian Gilmore, the president of the Royal College of Physicians.
Thalassaemia patients commonly have as many as eight prescriptions per month. Patients with other chronic conditions, such as diabetes, are exempt from paying prescription charges. However, thalassaemia patients bear the financial burden of repeat prescriptions. Given the manifold challenges faced by thalassaemia patients, which I have only just touched on, does the Minister agree that it is unfair and inequitable that they have to pay these charges when patients with other chronic conditions are exempt?
I look forward to hearing the Minister’s response, either today or in correspondence, if further details arise. I pay tribute to the UK Thalassaemia Society not only for its assistance in the debate, but for the work that it does to assist patients who often fall beneath the radar of proper clinical provision and support across the realms of health, education and social services. I hope that I receive her support today.
4.15 pm
The Parliamentary Under-Secretary of State for Health (Ann Keen): It is a pleasure to serve under your chairmanship, Mrs. Dean. I thank the hon. Member for Enfield, Southgate (Mr. Burrowes) for raising this important debate. He takes a strong interest in the treatment and care of patients with haemoglobin disorders, such as thalassaemia major and sickle cell disease. As he will know, the prevalence of adult thalassaemia in his constituency is among the highest in the country. I also know that he has strong links with the UK Thalassaemia Society, which has its base in his constituency and provides such a positive voice for its members. It is doing sterling work in helping to drive up standards of care.
I welcome the opportunity to raise awareness of these long-term, chronic, debilitating conditions, the impact of which can be devastating not only for those affected but for their families and carers. An estimated 850 patients with thalassaemia major and about 12,500 to 15,000 patients with sickle cell disease live in England today. I would like to talk about the progress we have made in developing policy in this area and to attempt to address the questions raised and comments made. Should I fail to do so because of the time constraint, I would welcome the opportunity to meet the hon. Gentleman outside the Chamber at an appropriate time.
Our work builds on the success of the national programme for antenatal and newborn screening for sickle cell and thalassaemia, directed by Dr Allison Streetly. This programme is the first worldwide linked screening initiative. It is identifying some 350 affected babies a year and is estimated to save the lives of some 15 infants a year through early intervention. The progress has been achieved in partnership with key stakeholders, such as the UK Thalassaemia Society, the Sickle Cell Society, the UK Forum on Haemoglobin Disorders and other committed clinicians in the field. The Archbishop of York chairs the steering group, and it is a privilege to have such a champion supporting this area. I feel that his chairmanship will move us all faster in a very positive direction.
Key to the development of high-quality services for haemoglobin disorders is the formal designation of clinical networks for specialist care across the country. The hon. Gentleman asked what progress had been
made; I can let him know very soon after the debate. The concept behind this is that every patient should have access to optimal specialist management and care, co-ordinated with routine care and provided conveniently close to home. We are working with specialised commissioning groups across the country to support the development of such networks, which will ensure that complications requiring specialist care are managed in the right place with the appropriate resources.
For example, strokes in children with sickle cell disease are common, and early diagnosis and immediate exchange blood transfusion can make the difference between a return to near normal and a long-term serious disability. Such early intervention is critical. Other clinical problems require highly specialist care, such as the management of potentially dangerous chest crises. The assessment and management of iron overload in those with thalassaemia is a rapidly changing area that, again, requires specialist interpretation and treatment guidance.
Our aim is to allow equitable access to comprehensive care across the country that is of a consistently high standard, and that addresses the concerns of patients and their families. This is a relevant time to mention the recently launched NHS constitution, which sets out our intention to ensure transparency and much greater consistency across all NHS commissioners in the way in which decisions are made about treatment and drug therapy. Such development underlines our commitment to addressing public concerns about the inequalities and unfairness in access to drugs.
As a first step to ensuring consistency of care in specialist provision and specialist commissioning engagement, we have succeeded in getting a national agreement—it has support from the Royal College of Pathology and the Royal College of Paediatrics and Child Health—on a specialist service definition for haemoglobin disorders, which covers thalassaemia major and sickle cell. That will help to ensure a consistent approach to service development across England, to encourage service planning and to underline the role of a specialised commissioner.
Currently, eight informal clinical networks are operating outside London and six within London, covering adjacent counties. Network meetings have identified some gaps in local services and those will be addressed via discussions with the local specialised commissioners. We have provided funding for the training of 13 additional staff—three doctors, six nurses and four clinical scientists. Once trained, the personnel will act as a focus for further educational development within the clinical networks. We are also working with the royal colleges to increase and enhance training in haemoglobin disorders. The hon. Gentleman specifically raised the issue of GP training and education in that role.
With the support of the UK Thalassaemia Society, the Sickle Cell Society, health professionals and other stakeholders, the National Haemoglobinopathy Registry was launched last October. It was supported by a report of the National Confidential Enquiry into Patient Outcome and Death on sickle cell and thalassaemia. The registry will allow us to collect details on patients with thalassaemia and sickle cell, and provide valuable information on patient numbers, complication rates and outcomes, which is a key factor underpinning the quality care agenda. We acknowledge that there is still a way to go in the development of service provision.
The hon. Gentleman raised the issue of cord blood. The NHS Cord Blood Bank has more than 12,000 units stored, some 40 per cent. of which is from the black and minority ethnic community. There are plans to increase the units to 20,000 by 2013. We have also asked NHS Blood and Transplant and the Anthony Nolan Trust to work together to develop plans on how we can meet the target more quickly.
On the question of bone marrow, it is important to put on the record that there are more than 100,000 bone marrow donors registered in Cyprus. That is 10 per cent. of the island’s population aged between 18 and 45, which makes it the fifth biggest registry in Europe and the 12th biggest in the world. The Cyprus registry is a member of the World Marrow Donor Association and is linked with more than 67 registers worldwide, including the UK. If a unit is needed, it is usually possible to source it from one of the network banks. The UK has access to such a network through the World Marrow Donor Association.
We acknowledge that there is more that we can do on service provision and the holistic approach that the hon. Gentleman outlined so well in his contribution. We have set the policy framework. With our support, the NHS can continue to build on the momentum for improvement. Our aim is to support high-quality, patient-centred clinical services for haemoglobin disorder. Key to that is the development of clinical networks of specialist care, and the concept that every patient should have access to optimal specialist management and care, as well as routine care provided conveniently close to home.
The treatment of thalassaemia is about the whole patient experience, which means annual reviews by specialists, routine—often monthly—blood transfusion and multiple prescriptions, including a requirement for oral iron chelation. We have recently carried out an informal review of services for haemoglobin disorders through which we hope to gain a better understanding of what is happening in clinical practice. That includes how the national clinical standards for care are impacting on services, and how current networks and commissioning arrangements are evolving. So far, reports have been very encouraging, with many examples of good and innovative practice and effective networking being noted. If any variations or issues arise, we will consider facilitating discussions between health professionals and specialist commissioners.
The Government are committed to phasing out prescription charges over the next few years in England for those with long-term conditions. Professor Ian Gilmore, president of the Royal College of Physicians, is undertaking a review to consider how the exemption should be phased in. The views of the public, clinicians and patient representative bodies, such as the UK Thalassaemia Society, have been sought.
A web survey hosted on the Department’s website gives anyone an opportunity to contribute their views until 27 February 2009. In line with Lord Darzi’s report, “High Quality Care for All”, our aim is to improve management of long-term conditions by offering more personalised packages of care closer to home, in order to allow people more choice and active involvement in decision making.
In conclusion, I thank the hon. Gentleman for initiating this debate and for identifying this important issue. I hope that he and other hon. Members will agree that
considerable progress has been made in raising the standard of care for haemoglobin disorders throughout the country and ensuring more equitable access to excellent care. I accept that there is room for improvement, and remain committed to supporting the NHS in achieving that improvement for patients. To do that, we will be working in partnership with key voluntary organisations such as the UK Thalassaemia Society and the Sickle Cell Society.
Mr. Burrowes: One issue that goes wider than the medical and clinical perspective is the concern that care crosses into other areas, such as psychological and social care support. That is very important, given that the communities suffering from thalassaemia are often disadvantaged. Is there a contact or a programme in which there is cross-departmental consideration of the need to provide particular support? Although such support needs to take place at a local level, it may need some national direction, as well.
Ann Keen: I appreciate the hon. Gentleman reminding me that he raised the point about the need for psychological and social support for the very young through to the troubled teenager and the entire family. As a former nurse who had patients with thalassaemia in my care, I know only too well how necessary that approach is. In line with Lord Darzi’s review on quality of care, personalised care is paramount to me, my Department and all Ministers. I look forward to working with all the societies to achieve that.
Financial Markets
4.28 pm
Mr. Andrew Pelling (Croydon, Central) (Ind): It is a pleasure to serve under your chairmanship, Mrs. Dean. In addition to the items declared in the Register of Members’ Interests, I should like to declare that I am a prospective pensioner of the Royal Bank of Scotland and that I have an overdraft with NatWest. Those declarations are necessary in the context of my speech.
I thank Mr. Speaker for allowing us to have this debate, but I also thank Ministers in the Department for Business, Enterprise and Regulatory Reform and the Treasury. They have gone the extra mile to give advice and help when I have approached them with concerns about important individual businesses in my constituency in this difficult time of credit famine. Obviously, our approach in this House is to be courteous to colleagues across the political divide, but I should like to emphasise that, when dealing with my concerns, Ministers have acted not only professionally, but with a great deal of care, and I appreciate it.
It is fair to say that some companies in the Croydon area continue to be hard-pressed when they seek credit in these troubled times. Rightly, the Government recognise that one of the greatest difficulties in the financial sector is the withdrawal of foreign banks from credit provision. That puts a real strain on our economy. Problems often arise from the action that the Government have found necessary to take regarding Icelandic banking institutions. Those banks had significant market penetration, and some significant companies in the UK economy have been affected. When, of necessity, credit is withdrawn, some companies are embarrassed, because they need to find appropriate credit immediately to continue their business.
Thanks are also due to the Government for listening to hon. Members’ views about the role that Northern Rock can play in the economy. It is especially good news that the Government reversed the strategy of winding down the book of Northern Rock. That policy seemed counter-intuitive, bearing in mind that the Government are keen to see the continued provision of credit to the economy as a whole.
My main motivation for leading this debate is to ask why the Government have not, at this stage, seen the bad bank solution as the one to pursue. Ministers have listened with courtesy and have not dismissed my comments in the past six months about the attractiveness of the bad bank solution. I am especially grateful to the Economic Secretary for that courtesy, but I am encouraged by what the Chancellor said yesterday. He said:
“It could be that in some cases it could be easier to do a good/bad bank split.”
When asked about the bad bank solution, Ministers have expressed concern that it is difficult to price the assets that would be transferred to such a bank. However, the best way for the Government first to provide confidence to the financial markets and subsequently to ensure the appropriate provision of credit to the economy, is to get markets going again by valuing those so-called toxic assets.
The Government have said that the problem is that they may have to rely on banks to price the assets, and they ask to what extent senior management figures in
the banking industry are able to understand some of their banks’ assets. However, the additional concern—this is not so openly expressed—is that such a valuation of the bad or toxic assets may lead to the complete equity destruction of the UK banking system, especially if we bear in mind that when the bankers say that assets are unpriceable, in reality they are probably saying that the value is quite close to zero.
To some extent, Members of Parliament enjoy the rather false frisson of talking nationalisation. It would probably be more helpful to talk less about that. It comes from a retro or nostalgic desire for the halcyon days when nationalisation was seen to be an effective policy option. Instead, we should talk more in terms of some forced reconstruction of the banking system, such that the economy will regain confidence through the provision of credit.
I would like to pose a question, although I know that asking questions is easier than providing answers. What has really happened with the Royal Bank of Scotland? Coming into the new year, the Government were moving with enthusiasm towards the idea of some kind of nationalisation, but that has not happened in the case of RBS. Is it because the Government are concerned about the ensuing liabilities if the bank were to be entirely absorbed within the state sector, or did they perhaps find that the senior management of RBS are themselves entirely unsure what they have inherited from the previous senior management?
I contend that some of our UK banks are, in reality, insolvent. There are substantial assets that could be taken into any bad banking institution; I note that JPMorgan has estimated their value at £260 billion. Clearly, that is large enough to destroy completely the equity of many of our banks, although it is fair to say—I know that the word “only” might seem ironic, although it is not intended to be—that that is only 22 per cent. of GDP. The earlier the intervention undertaken by Government to set up a bad bank, the easier it will be to contain ever-burgeoning levels of toxic assets.
I know that there was controversy surrounding the issue. Joe Stiglitz enlivened the debate by saying that there was a danger of Governments paying “cash for trash”. However, it is important for us to learn the lessons from the experiences in Japan, where zombie banks were allowed to exist for many years. It was very deleterious to the Japanese economy, and is still having an adverse effect.
I fear that the Government’s attraction to the idea of insuring the bad debts remaining on banks’ balance sheets is merely deferring the recognition that the value of those assets is close to zero. The controversy is shared in the United States, and it is clear from recent debate that the new Treasury Secretary is somewhat sceptical of the attractions of a bad bank solution. Indeed, the amounts are significant. A senior US Senator—I think it was the Chairman of the Senate Banking Committee—estimated potential bad bank exposures at $4 trillion.
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