Neuromuscular Care (North-West)

Paul Burstow Excerpts

Wednesday 9th February 2011 Westminster Hall

[The Minister of State, Department of Health (Paul Burstow)]

I congratulate the hon. Member for Weaver Vale (Graham Evans) on the passionate and powerful way in which he clearly set out the case. He has done a great service to the interests of those who suffer from muscular dystrophy and their families. I thank him for securing the debate. I also congratulate him on the work he has done in his role as a member of the all-party group on muscular dystrophy, not only for his region but in raising the issue more thoroughly around the country. I join him in paying tribute to the work of the Muscular Dystrophy Campaign and the North West Muscle Group. Both those organisations operate as powerful advocates for people affected by these lifelong and life-limiting conditions.

It is 18 months since the all-party group published the Walton report, which showed how far we had to go—as the hon. Gentleman has described only too clearly— to improve the care of those with muscular dystrophy and other neuromuscular conditions. There are historic weaknesses. The intervention of my hon. Friend the Member for Southport (John Pugh) just now underscored that point. There are weaknesses in the current system and in how we organise the things that have rightly been highlighted by today’s debate.

There is a real sense of urgency for change, not least because of the simple fact that we know about the huge personal and family costs of this condition and how it impacts upon people’s lives. Unless care is properly co-ordinated and well conducted, NHS resources will be wasted. They will be invested in the wrong places and will not deliver good outcomes. That cannot be acceptable in our modern health care system. Several colleagues alluded to the costs. The figure of £13.6 million was mentioned as the overall cost of unplanned hospital admissions for those with neuromuscular conditions in the north-west. If we analyse the journeys that people make through our health care system, that shows the actual cost.

Some hospital admissions are necessary and unavoidable. A person who contracts a respiratory infection is a good example of where there is an unavoidable need. However, if we consider the figures in greater detail, the number of people admitted for non-invasive, elective care, shows that there are many preventable costs in the system. That amounts to just under £5 million in the north-west alone. Those costs could be avoided and the money could be spent better. That has to be a key message. It is not just about spending more; it is also about spending better in our system. We need to ensure that we consider the economic case for investing wisely in services that can, in fact, provide a better quality of life. We must also ensure that we avoid unnecessary admissions in the first place.

Positive steps have been taken in the north-west. That progress has been hard fought, and it deserves to be recognised and applauded. Indeed, the strategic health authority has told me that £4.2 million has been spent on developing neuromuscular services over the past four years. As mentioned, a dedicated neuromuscular service at Alder Hey has been set up to provide excellent care for children. Out of that £4.2 million, £289,000 was invested as a commitment to the service provided and led by Dr Spinty. There appear to be some grounds for dispute over whether such services are funded or unfunded. However, we certainly need to keep ensuring that resources go in. There is a case to be made for ensuring that resources are well spent. Paediatric critical care services have improved with a dedicated paediatric intensive care transport team. There are additional beds at Alder Hey and the Royal Manchester for ventilation services, with similar investment in both invasive and non-invasive respiratory services for adults, too.

Although those developments are welcome, the local NHS accepts that many issues still have to be addressed, many of which have been aired today. The specialised commissioning group is responding to the Walton review by reviewing the region’s neuromuscular services. In essence, that review group—made up of clinicians, commissioners, patients and families—is aiming to address exactly the issues aired today: how to improve the poor support available to those diagnosed with neuromuscular conditions in adulthood; how to address the variability and patchiness in the availability of specialised neuro-rehab and wheelchair services; and how to improve transitional arrangements to help young people to move from paediatric to adult services. That is an absolutely key issue that comes up time and again in relation to rarer conditions when considering how well or how poorly the NHS manages those vital transitions from child and adolescent services to adult services.

The review group has updated the all-party group on muscular dystrophy on the review’s progress. On the kind invitation that has been extended to me to attend the meeting of the all-party group, I do not know whether I can attend on the specific date mentioned. However, I will certainly undertake to attend a meeting of the group as soon as I can and take questions from the group’s members.

I understand that the NHS North West specialised commissioning group will consider the review’s recommendations in March, and that the full report will be published shortly after. Clearly, I do not wish to pre-empt that report in any way but, based on the conversations I have been having in preparation for the debate, I think that the review team is asking some important and necessary questions. Those questions are on sharing best practice to ensure greater consistency, on work force planning, so that there is better co-ordination and leadership across care pathways, and on finding efficiencies across the system in line with the region’s quality, innovation, prevention and productivity plans.

The key to all of this is to have a much clearer split of responsibility—a sense of joined-up access across the care pathways to deliver a less fragmented and more person-centred approach to planning. I will say a bit more about the point that the hon. Member for Islington South and Finsbury (Emily Thornberry) raised on that in a moment. For me, the greatest challenge for the modern NHS is how to make sure that we have much more joined-up delivery. We have to accept that care and support for those with long-term conditions is a particular area where we do not get it right often enough, and it is unfinished business. There is too often a disconnect between what is commissioned at a regional level by specialised commissioning groups and what is available at a local level as commissioned by primary care trusts. It not only confuses patients and compromises both their care and quality of life; it also leads to inefficiency and duplication within the system.

Putting that right means thinking radically. It means putting greater emphasis on managing pain and helping people with multiple conditions. It means finally developing a personalised system to end the attachment to bricks and mortar institutions and to reinvent health care in a modern context—a health system that is much more about what can be delivered in the home and in the community than it is about clinics and consulting groups.

When it comes to long-term conditions such as muscular dystrophy, attention tends to fall on specialised commissioning groups, and that is what has been rightly talked about today—the response in terms of tertiary care. Tertiary care is clearly important. We can see, from the important work at Alder Hey and Royal Manchester children’s hospital, the difference that such specialist centres can make. However, there also needs to be an equal onus on community-based support—the ongoing day-to-day care that is so important to support quality of life and to keep people out of hospital in the first place.

Primary care trusts and in the future GP commissioning consortia and health and well-being boards, not the specialised commissioning teams, will be responsible for that. They will shape the services that clinicians and social care need to provide to meet the needs of patients, such as hydrotherapy, wheelchair services, speech and language therapy, respiratory support and help with swallowing. It is therefore essential to have better co-ordination, a better link-up between commissioning teams across health and social care and beyond, and, rather than individual bits, a person-centred approach to planning across the whole care pathway. That needs a whole life course approach, which is why I return to the point that we need a focus on transitions between childhood services and adult services. The review’s recommendations will help to bring that about in the north-west. I look forward, as I am sure the hon. Member for Weaver Vale does, to its publication and to it being put into effect.

To take the case of specialist physiotherapy, the SHA recognises that there is pressure on tertiary centres, which is something that the hon. Gentleman talked about. The challenge must be met by a whole system approach that makes full use of the available resources. NHS North West tells me that it is already mapping out in more detail what neurophysiotherapy services are available across the north-west. The current specialist physiotherapists are being encouraged to work with community physiotherapy to improve their skills and to help them to offer appropriate services at a local level. That outreach to upskill other parts of the work force will be a key way to improve delivery. I understand that Manchester PCT is also doing some exciting work in piloting a neuro-rehab service that treats people at home or in the community, rather than in a clinic. That brings into relief the potential benefits of integrating tertiary and community-based services—of how, by doing things differently, we can improve services for patients.

The hon. Gentleman talked about the NICE guidelines. He is absolutely correct, as are other hon. Members who have spoken in the debate: we need greater consistency, and being more consistent means being clear about what “good” looks like. I have already mentioned NHS North West’s neuromuscular services framework, which is a helpful starting point for bringing different organisations together. My hon. Friend the Member for Southport also raised the issue of the need for clinical networks, and I will say a bit more about that in a moment. The review group is also making the case for the clinical networks and clinical network managers to provide leadership, to share best practice, and to provide challenge to commissioners. Again, that would seem to be a sensible approach not just in the north-west, but around the country. I would expect the NHS commissioning board to help to take that forward when it takes up the reins of specialist commissioning.

Of course, another issue mentioned by hon. Members is the need for clear guidelines and quality standards from NICE to cover muscular dystrophy and various aspects of the delivery of care and treatment for people with the condition. I hope that Members understand that it is not for me to direct NICE. Its strength as an organisation rests on its independence from Government, and therefore I will not compromise that. What I will do, and which is important to do, is ensure that it is made aware of today’s debate, so that it can take it into account in its deliberations. The East of England specialised commissioning group is leading on quality standards work and service specifications, so there is work to help influence that going forward.

Another influence on NICE are the conversations with the leadership group of the Neurological Alliance on how it can develop stronger clinical advice for a range of rare neurological conditions. I strongly urge the Muscular Dystrophy Campaign to actively engage with that leadership group, so that it is also at the table with NICE. NICE is part of that forum, which presents an important opportunity to achieve faster progress and effective action. We are also, in the context of the work of health and well-being boards and GP commissioning consortia, looking at how to update the guidance for joint strategic needs assessments. I urge the Muscular Dystrophy Campaign to have an input, through the Neurological Alliance, on that work, too.

Equally, the National Quality Board is working on a broad library of quality standards to cover all areas of NHS care. Again, there will be opportunities for the Muscular Dystrophy Campaign and others to feed into that process. Input through the leadership group of the Neurological Alliance would be a very effective way of getting its voice heard.

Careers and training have been referred to in the debate. I suggest that, rather than a Minister trying to dare to dictate the curricula of the medical professions, it might be more prudent to ensure that they are also aware of this debate, with a covering letter from me to draw it to their attention so that they can take it into account as they reflect on future curricula.

On the issue of advice and support for patients, a strong case has been made for the case-management approach. It is important that we look outwards to patients and their families. At the moment, people with long-term conditions can feel disempowered and frustrated by the complexity of the system. It can be a fight, as the hon. Member for Weaver Vale has described, to understand what is available. As the hon. Member for Foyle (Mark Durkan) rightly said, it should not be the case that every time someone enters the system it feels like they are navigating it for the first time, as if no one else has ever gone through that before. That is a perfect way of describing how the system should not feel and how it must not feel as we go forward. The hon. Member for Weaver Vale described the example of Liam. That example makes a very strong case for increasing the number of neuromuscular care co-ordinators, who are known to be extremely helpful in improving patient care and outcomes. I understand that that is something that the review group is exploring and it will, through its contracting arrangements that go beyond that, help to drive that forward. I have no doubt in my mind that there is a strong economic case for the co-ordinators.

I am also pleased that the Manchester PCT is looking at how personal budgets can be used to help people with neuromuscular conditions to get the help they need. Personal budgets are more than a lever to give patients more control. They can be a catalyst for bringing services together around the needs of the individual—another way in which we can integrate at an individual level. In fact, a number of the pilots that are testing personal health budgets are actively involving people with neuromuscular conditions.

The final question, asked by both my hon. Friend the Member for Southport and the hon. Member for Islington South and Finsbury, is how do we maintain continuity during the transition period? The Health and Social Care Bill is clear that highly specialised services would, in future, be commissioned by the NHS commissioning board. I can confirm that this condition is included among them, as it is already designated as a specialist commissioning area. The board will decide how best to organise itself to deliver, on a case-by-case basis, different commissioning activities on different specialist conditions. It would be wrong, when the Government are saying in the Bill that we are giving autonomy to an NHS commissioning board, for the Minister to then specify, in an Adjournment debate, to the nth degree precisely how the NHS commissioning board should discharge that function.

The NHS commissioning board has that responsibility, and that comes with a responsibility on patient and public engagement as well. It is important that lessons from existing experience of specialised commissioning are drawn together to inform the way in which those responsibilities are discharged in the new system. I will undertake to ensure that this debate is drawn to the attention of those who are doing that work at the moment. Again, I think that the Specialised Healthcare Alliance provides the Muscular Dystrophy Campaign with a way in to influence and shape those opportunities. I note from comments to the Health Committee before the general election that there was a recognition that we could do much more by moving to a national commissioning board that can streamline, simplify and ensure greater consistency around contracting for these services.

That brings me to the other element of the new architecture, which is general practitioner commissioning consortia. Clearly, integrated planning between consortia and the NHS commissioning board will be essential, just as joint working between primary care trusts and specialised commissioning groups is at present. I am keen that strategic health authorities will encourage GP pathfinders, along with the early implementers of health and well-being boards, to work with the specialised commissioning groups to explore how the relationship can work best on the ground so that we develop the best case examples to inform the system as we move to the new arrangements.

As the hon. Member for Weaver Vale rightly highlighted, GP consortia will need advice and guidance as they take up the reins. There will be a great opportunity for patient groups to step in and provide support in that way, and I would certainly encourage that kind of active engagement. Also, health and well-being boards will have a key role as system integrators—they will have a major part to play in developing the more joined-up system. We will consider whether that is enough or whether we need to do more as we scrutinise the Health and Social Care Bill clause by clause in the coming weeks. The most effective way of operating will be through the regional networks that the Neurological Alliance is setting up. Again, I hope that the Muscular Dystrophy Campaign will be part of that.

Yes, we have to ensure that we get specialist commissioning right, but we also have to ensure that we get commissioning for long-term conditions in general right, and we have to do that at a local level.

I thank the hon. Gentleman for securing this debate and for setting out the issues so clearly, and I thank other hon. Members for their contributions. We know that there is much to do to improve the care of those with neuromuscular conditions, and that we are not doing enough yet. We know that the system that we inherited has not delivered uniform and consistent access to services—we must do more. We also know that financial pressures should not block progress because, all too often, action here saves money that can then be better spent on improving the quality of services.

I look forward to reading the final report of the north-west review group—and, indeed, the other reviews that are taking place—and I hope that it can be a catalyst for real improvements in the years ahead. The hon. Gentleman is right to say that we have to translate the intentions behind the review into tangible actions that transform the lives of his and many other hon. Members’ constituents up and down the land.