NHS Specialised Services

David Anderson Excerpts

Thursday 15th January 2015 Westminster Hall

[Mr David Anderson (Blaydon) (Lab)]

I congratulate you, Sir David, on your knighthood, which is well deserved. I also congratulate the hon. Member for St Austell and Newquay (Stephen Gilbert) on the very good way in which he introduced this serious issue; I disagree with nothing that he said.

I apologise, Sir David, because as I told you earlier I am one of the co-signatories of the debate that is to take place in the main Chamber. I think this is the first time since the setting up of the Backbench Business Committee, which we both sit on, that proceedings in the Chamber have not been extended by questions or statements, so they will run to time for the first time. Unfortunately, I will have to leave, although I will get back for the wind-ups, if possible, or even before.

I want to pick up on three things: the work that I am involved in as the chair of the all-party group for muscular dystrophy; issues brought to my attention by the Northern Neurological Alliance in the north-east; and some specific concerns about NHS England and what it is involved in.

The APG for muscular dystrophy has in effect been carrying out an investigation for more than a year into national commissioning. We worked closely with various groups before the change in the law, developing good working relationships and trying to ensure that people with these relatively rare diseases are looked after properly and that the commissioning works properly in their interests. We have had full engagement and good commitment from patients, carers, the NHS professionals, politicians—and, it has to be said, health service Ministers.

What has become clear, as will come up in the report that will probably be launched in the House on 24 March, is that there are many gaps in specialised neuromuscular care, which will be highlighted, at least, by the inquiry, but will need addressing by people such as the Minister, although hopefully under another Administration a few weeks later.

For example, in my region, the north-east, we have world-class, cutting-edge neuromuscular specialists working in multi-disciplinary care at the specialist muscle centre in Newcastle. On the grounds of urgent need for more support, however, we need additional neuromuscular care, advice and support to provide essential services to people living at home with such problems. We need an additional neuromuscular consultant and the psychological support necessary for people who live with these problems. Will the Minister meet me and the rest of the APG for muscular dystrophy to discuss not only the issues in the north-east, which are examples of the type of cases being brought before the investigation, but the problems throughout the country, to see what we can to do to improve care for these people?

The hon. Member for St Austell and Newquay expressed concerns about co-commissioning and the provision of specialised services between NHS England and the CCGs. That is a real worry. Problems have been identified and raised with us in the implementation and interpretation of the neuromuscular annex of NHS England’s neurosciences service specifications. Some commissioners and hospital trusts appear to believe that the neuromuscular annex is a wish list, rather than a requirement. We are clear: it should be a requirement, not a wish list. Will the Minister address those points, if he can, in winding up? What action will he take to ensure that the neuromuscular annex of the service specification is fulfilled by NHS trusts listed in the specification as a compulsory requirement? If he can make that clear to the people on the ground, that would be a great step forward with the problems.

I also want to raise some issues brought to me by the Northern Neurological Alliance, a charity that operates in Northumberland, Tyne and Wear and County Durham. It aims to improve the lives of people with long-term neurological conditions, or LTNCs, and their carers. It does so by seeking their views on the quality of services received and then campaigning for improvements where necessary. The charity calculates that in the north-east of England at least 50,000 people are living with one of the 15 most common LTNCs, such as multiple sclerosis, Parkinson’s disease and acquired brain injury. Many LTNCs, however, are less common.

Many people experience reductions in their quality of life as a result of such conditions. Many examples have been given of loss of independence, poor mobility leading to social isolation, and, clearly, financial challenges. In addition to those who have such conditions, there are the many family members who act as carers. As a result, the total number of people in the north-east affected by LTNCs is much greater than the 50,000 who actually have the conditions.

Without doubt, services for such people need to be improved. In 2011 the National Audit Office published a report that looked at the services provided for the some 2 million people who are assessed to be suffering with a neurological condition. They found evidence of poor co-ordination of services between health and social care, and a nationwide postcode lottery of specialist services. Unfortunately, it would appear that things have not improved a great deal.

The Neurological Alliance has contacted the CCGs for information about how they target resources for people with neurological conditions. The findings show that only 14.7% of CCGs have assessed local costs for the provision of neurology services; that only 20.4% and 26.2% of CCGs have assessed, respectively, the number of people using neurological services and the prevalence of neurological conditions within their area; and that such issues have a significant impact on patient care, with 58.1% of patients having experienced problems in accessing the services or treatment they need—clearly, a big group of people.

LTNCs have not attracted the same national priority as conditions such as cancer or heart disease, which is possibly understandable because of the greater prevalence of such diseases. However, for people who live with LTNCs, it is equally important to get looked after properly, too. They clearly wait much longer for services to come through. The impact can be serious for many of them. The need for clear and determined national leadership is urgent to achieve the requisite improvements that I hope everyone in the Chamber agrees we should be seeking.

Finally, I want to pick up an issue that has arisen in the past few days; I spoke about it yesterday with the Prime Minister. It involves some of the problems with NHS England. A new drug called Translarna can treat a small group of young boys who suffer from a strain of muscular dystrophy known as Duchenne muscular dystrophy. In August 2014, the European Commission granted conditional approval for Translarna. It is the first licensed drug that can treat an underlying genetic cause of Duchenne ever to have been approved anywhere in the world. It was a landmark decision for the community of those suffering from Duchenne.

Translarna treats boys whose Duchenne is caused by what is known as a nonsense mutation—if anyone wants me to explain that, I had better leave now! The mutation accounts for 10% to 15% of the boys who suffer with Duchenne. The truth is that those young men have no chance of being cured of the disease once they have it, but we try to enhance and extend their lives. Some great work has been done in this country and even better work done in countries such as Denmark. Translarna will have a huge impact on that 10% to 15% of the boys suffering from the disease. To qualify for the treatment, however, young boys must be aged over five and still walking. Clinical trials indicate that Translarna could slow the progression of the condition and keep the boys walking for longer. It has already been made available in European countries such as Spain, Germany, France and Italy.

We understand that there are different regimes and that we have to go through our regime. Translarna was being assessed by NHS England, which has the final decision on whether the drug will be approved and, as we hope, funded for boys in England. The families understood clearly that a decision was to be taken last September, making the treatment—really important for the young people affected—possibly available from April. Unfortunately, however, due to the threat of a legal challenge, NHS England has stopped the assessment of the drug while it reassesses its process. An internal debate within NHS England has stopped the assessment of a drug that could mean at the very least that a number of those boys could be walking for much longer than was otherwise thought possible.

Yesterday, more than 100 families, along with a lot of colleagues from both this House and the other place, came together to lobby and deliver a petition of over 23,000 signatures to the Prime Minister in Downing street. To his credit, he answered my question yesterday positively and also met us outside Downing street, where he gave a commitment to the families that he would do all he could, adding that he would speak to the Secretary of State before going to America. He was supportive of what we are trying to do.

The reality is that we cannot allow an internal discussion within NHS England to stop the treatment. The difference could literally be that the boys concerned will stop walking when that does not have to happen. I could not personally live with that. We must do something about it.

I ask the Minister to give us an assurance today that the Department of Health and NHS England will work together to see whether they can move the situation forward. Yesterday, the Prime Minister said—he did not mean it disrespectfully—that he had given NHS England a lot of work to do recently. We all understand that. Although we might kick around in here and have an argument between ourselves about it as if it was a political football, the NHS is about helping people such as the young people I am talking about. It cannot save their lives, but their lives can be improved and, we hope, extended. Translarna could do that, so I hope that between us we can find a way to make things work.