Specialist Neuromuscular Care and Treatments

Barbara Keeley Excerpts

Tuesday 15th December 2015 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak in the debate with you in the Chair, Mr Brady.

As others have done, I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing the debate. She gave a moving account of the Hill family in the light of Archie’s diagnosis and of the impact on Archie and his family of Duchenne. We have also heard excellent speeches from my hon. Friends the Members for York Central (Rachael Maskell) and for Bridgend (Mrs Moon) and the hon. Members for Romsey and Southampton North (Caroline Nokes), for South Down (Ms Ritchie), for Strangford (Jim Shannon) and for Dumfries and Galloway (Richard Arkless).

The all-party group for muscular dystrophy has carried out essential work to raise awareness and understanding of the needs of people living with muscular dystrophy and other neuromuscular conditions. I congratulate the APG on the quality of its inquiries and reports. The right hon. Member for Chesham and Amersham also paid tribute to the work of Muscular Dystrophy UK, and I join her in that tribute.

Providing access to treatment for people with muscular dystrophy is complex, because it is a rare condition. There are challenges in delivering localised, specialised care to people who have multiple, complex needs, but that cannot be an excuse for poor-quality care. As we have heard, some 70,000 people are affected by a neuromuscular condition in the UK. We must ensure that the NHS delivers equal treatment for equal need and that those with complex needs may have access to the treatment and support necessary to help them achieve the best quality of life possible.

In 2009 the APG’s Walton report showed clear deficiencies in the provision and planning of, and access to, care for people living with neuromuscular conditions. It found cases where care was “inadequate and not acceptable”. Although the report offered many sensible recommendations to improve the quality of care, the potential for progress was limited by the coalition Government’s reforms of the NHS under the Health and Social Care Act 2012.

Given those reforms, the APG undertook a six-month inquiry that considered their impact, releasing another report in March this year. Sadly, the reorganisation of the NHS and other reforms had done little to improve access to and availability of treatment for patients with neuromuscular conditions. Sadly, in fact, the reforms had made it even harder for patients to access support as a result of significant regional variations in the commissioning and funding of services. That is the nub of what I want to say.

There is a failure to join up services, and confusion about responsibilities and processes is a common theme. The hon. Member for South Down gave us an excellent quote on that lack of joined-up services. At the national strategic level there has been no specific mention of neuromuscular conditions in the five-year forward view, nor anything in the consultation document on the draft NHS mandate, which suggests a failure to recognise the specific needs of such patients at the strategic level. In fact, the five-year forward view groups together rare diseases and cancers, but there is a great deal of difference between all the conditions that we have discussed today and rare cancers.

There is a lack of clear guidance on which bodies in the NHS fund certain services and, as we have heard, sometimes people are not even receiving crucial respiratory support. Locally, there were examples of clinical commissioning groups failing to fund sessions of specialist neuromuscular physiotherapy or to provide sufficient funding for people to receive the right wheelchair at the right time. That is clearly so important and was mentioned by my hon. Friend the Member for York Central and the hon. Member for Romsey and Southampton North. It must be right for a child to have a comfortable chair while growing up.

The coalition Government’s reforms have also contributed to a delay in decisions on the availability of drug treatment for Duchenne muscular dystrophy, a life-limiting illness that affects about 2,500 boys and adults. The right hon. Member for Chesham and Amersham talked about that so well. To have to wait with a condition such as Duchenne for a decision on the drug Translarna is clearly agonising. It is a shame that the issue has been caused by NHS England halting its assessments to review its processes. I was not present at a Westminster Hall debate last week in which I understand that the Minister present said that he was “hopeful” that access to the drug would become available:

“I am hopeful about Translarna…NICE has been consulting on the process, and I believe the company has been engaging with NICE on pricing. I am hopeful that there will be a decision in the next few months”.—[Official Report, 8 December 2015; Vol. 603, c. 274WH.]

As he went on to say, however, the decision is not in his gift.

I hope that the Minister’s optimism is well founded, because as we have heard today it must be recognised that time is an important factor. The decision is different from some others, because the timing can affect the benefit that the boys will receive. I wish to ask, as everyone else has done, about that decision, and what he is doing to ensure that delays do not happen again. We must ensure that system of wider support is available for patients and their families and carers. In some cases people need 24-hour support and care; homes must be adapted; physiotherapy, speech and language therapy, and occupational therapy need to be available; and carers need access to the right advice and support, as has been said.

I am concerned, like others, that the Government’s failure to protect social care funding and other non-NHS health funding, such as training budgets, will mean that that wider network of support is not available when needed. The Walton report highlighted issues with social care back in 2009, but since then the number of people with access to publicly funded social care has fallen by 25%. The availability of the right support for people with specialist care needs is unlikely unless we have a sustainable funding settlement for both the NHS and social care. The difficulty with recent funding announcements, if the Minister intends to refer to them, is that the 2% social care precept and the better care fund are back-loaded funding mechanisms, with nothing this year and little next year.

We have heard about the regional differences in access to care. The Walton report highlighted that there were only 13 neuromuscular care co-ordinators when 60 were felt to be needed. My hon. Friend the Member for York Central said that there was only a single neuromuscular care adviser in North Yorkshire; in fact, no neuromuscular care adviser support is available for adults living with such conditions in Greater Manchester or the surrounding areas of the north-west. That is in spite of the fact that an estimated 8,100 people with a muscle-wasting condition live in the north-west. There is a need to ensure that clinical commissioning groups and other regional health organisations are aware of their responsibilities. Sadly, the findings of the 2015 APG report suggest little progress in the issue of unequal access.

Given the devolution deals on health and social care in certain parts of the country, will the Minister assure us that the inequalities in specialised services that we have heard about will be addressed and that the relevant bodies will be made aware of their responsibilities, which they do not seem to be at the moment? The debate has highlighted the fact that we have ingrained problems in our health and social care system. The lack of a sustainable funding settlement for social care and other recent reforms have led to fragmentation and instability in services. That means that inequalities in care sadly will continue. I urge the Minister to consider in full the most recent report and recommendations from the APG. We must ensure that people with neuromuscular conditions receive the care that they need, and that those inequalities in care are addressed.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

It is a pleasure to serve under your chairmanship, Mr Brady. I am left with 10 minutes in which to try to deliver my speech and the answers that I have carefully prepared while listening to colleagues’ comments. If I run short of time, I will undertake to write to everyone in the Chamber with answers to the points raised.

I start by paying tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) for securing the debate. She is a tenacious advocate on this issue, as on others. I join her in paying tribute to Archie and his family. I have met patients who suffer from these diseases and their families, and one’s heart goes out to them. One wants to pay tribute to the bravery with which they deal with their conditions. As is so often the case in the history of medical progress, the families, patients and carers are those who advocate and, in the end, win through to make their point heard, with the help of colleagues from across the House. My right hon. Friend eloquently paid tribute to the families of children with these disorders and diseases who, in many ways, suffer every bit as much as the patients who show such incredible fortitude. She asked me last week whether I would give her an A grade for effort and persistence. I will happily give her an A-plus in this end-of-term summary, but the people to whom we really want to give an A-plus are NICE and NHS England.

I want to touch on some of the excellent points that were raised. My right hon. Friend raised Vimizim and Translarna, so I will say something in detail about the timing of those decisions in a minute. She also made an important point about standards of care across the NHS in clinical trials, which was mentioned by numerous colleagues, and the importance of NICE giving more prominence to the time aspect of these conditions, which are unusual because they can deteriorate with every week’s delay in getting treatment.

The hon. Member for York Central (Rachael Maskell) gave us the benefit of her front-line clinical expertise. In case I run short of time, I shall say now that I will happily convene a meeting at the Department of Health with officials from my Department and NHS England, to which I invite colleagues from all parties who want to discuss the issues she and others raised about front-line care, because a range of practical issues about such care has been raised, in addition to access to drugs, and giving colleagues the chance to raise such points on behalf of their constituents would represent a powerful opportunity. The hon. Lady talked in particular about training and the interface of paediatric and specialist services, which I come across in connection with numerous different specialist conditions.

My hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) spoke passionately about James, Jules and Jagger Curtis, and the importance of expediting those particular decisions and quicker assessment, as well as adoption in general. That is a passion of mine, which was why I launched the accelerated access review to look systemically at what we can do to expedite getting new medicines into the service. She also touched on the importance of wheelchair access.

The hon. Member for South Down (Ms Ritchie) talked eloquently about Michaela and the importance of specialist, multidisciplinary teams. The hon. Member for Strangford (Jim Shannon), who gets the prize for appearing in more debates with me than any other Member of the House, which is a tribute to his activism as the Democratic Unionist party’s spokesman on these issues, highlighted the importance of Belfast as a hub of research and regional strategies in Northern Ireland and spoke about his constituents. This is a devolved matter, and while I pay tribute to the work of researchers and medics in Northern Ireland, it is important that the devolved Administration in Northern Ireland put in place a similarly enlightened commissioning process.

The hon. Member for Bridgend (Mrs Moon) raised the broader issues of Parkinson’s and neurological disorders, while the hon. Member for Dumfries and Galloway (Richard Arkless) spoke passionately about his mother’s suffering. Before I came to Parliament, I worked in Scotland and, as he highlighted, in this area, as in several others, Scotland pioneers some of the clinical commissioning work. The supreme irony of the debate was brought to light by his request that we depoliticise the NHS. For me, one of the greatest steps following the Health and Social Care Act 2012 was the separation of the NHS from the Department of Health. NHS England now operates under its own arm’s length management, subject to a mandate from Ministers

We do not control the NHS—believe me that if, for one afternoon, I could do that, I wish it was now. I would love nothing more than to pull the lever and give all these children the drugs that we all want them to get before Christmas, but that is not in my gift, and I suggest that it is in all our interests that it is not. It is right that such decisions are taken by NHS England and clinical professionals, advised by the very best people at NICE.

[Barbara Keeley]

It is important that the NHS mandate covers these conditions because at the moment it does not. Something must be done to make sure that they are covered.

[George Freeman]

In the few minutes I have available, let me say a few things about the main issues raised. I pay tribute to Muscular Dystrophy UK, Robert Meadowcroft, Emily Crossley, the Duchenne Children’s Trust, Action Duchenne and all the other organisations that work so hard in this area, and specifically on the two or three key drugs.

I remind the House that the decision from NICE on Vimizim is due before the end of the year. Without breaching due process, I have asked that, if that decision is in the pipeline, it can be made as quickly as possible, ideally before we all break up for the Christmas holidays. That is not in my gift, but I made that request. Similarly, I have requested that the Translarna decision, which I believe is due in February, is similarly expedited. However, again, that is not in my gift, and while during the year the Prime Minister and I have urged NICE and NHS England to do everything they can to expedite their decision making on those drugs, we do not have the power—rightly, in my view—to step in and breach process. It is fair to all patients in the NHS that decisions are taken properly.