To ask Her Majesty’s Government what is their response to the Walton Report on Access to Specialist Neuromuscular Care, launched in August.

The department welcomes the Walton report into services for those living with muscular dystrophy. Following the publication of the National Service Framework for Long Term Conditions in 2005 to improve health and social care services for those with muscular dystrophy, progress to improve services has been made. However, in some parts of the country, services are not meeting the expected standards. The department is committed to working with stakeholders to improve overall standards.

I thank the Minister for that reply, especially the last bit about improving standards. Will the Government take urgent action to address the disturbing fact revealed in the report that the life expectancy of boys with Duchenne muscular dystrophy living in areas of Britain with poor specialised services is only 18 years, while in other regions with better specialised services it is now over 30? Will the Government in particular encourage the 10 national specialised commissioning groups to ensure that there is co-ordinated multidisciplinary specialist care throughout the country for boys in that situation?

I thank the noble Baroness for drawing this issue to my attention. We have enormous sympathy for people living with muscular dystrophy—and their families and carers—particularly those with Duchenne, a very severe disease with which about 100 boys are born every year. We are very concerned that life expectancy is shorter in some areas than in others. We are aware that in some parts of the country—for example, in the south-west and West Midlands—specialist services have been redefined and redesigned. We need to learn from that. I have asked Steve Collins, who is the deputy director for commissioning, to look at how other regions might learn from the south-west and West Midlands. I am happy to offer the National Specialised Commissioning Team to work with the muscular dystrophy association to set up the best practice commissioning workshop in the new year.

My Lords, I am deeply honoured by the fact that the all-party group should have decided, at a meeting at which I was not present, to attach my name to this report. Is the Minister aware that the most recent evidence from the highly specialised centres in Hammersmith Hospital, Oxford, Oswestry and Newcastle upon Tyne has been able to demonstrate that, for boys with Duchenne muscular dystrophy, the average age of death is now in the 30s, with a few boys now living into their 40s? To ensure that there is stronger national leadership and clearer accountability for the development of specialist health services for neuromuscular diseases, will the Government instruct the NHS National Specialised Commissioning Group to appoint a national named lead, who will be responsible for the development and co-ordination of specialised commissioning for these patients?

I have to say—I am sure that the House will join me in this—that I am not surprised that the report was named after the noble Lord, given his record and work in this area. For those with rare neuromuscular diseases whose services are commissioned by the National Commissioning Group, there is already in place a named commissioning manager, medical adviser and finance leader, who have responsibility to commission these services. However, of course this varies across the 10 SHAs and groups, depending on the type of commissioning that they are doing. I should like to take the noble Lord’s question back and ask again whether we will be looking for a named lead responsible for those services. I suspect that, given his intervention, the answer will probably be yes.

My Lords, what progress has been made in embedding in the NHS the vital posts of neuromuscular care co-ordinators in the UK, several of which are reliant on charitable funding? All of them are vital in maintaining equal access to healthcare for people with muscular dystrophy and other neuromuscular conditions. Does the Minister realise that this is an equality issue, not just a health one?

The noble Baroness points to the very important work that neuromuscular care co-ordinators do and we are aware that several of them are reliant on charitable funding. The local health authorities are responsible for ensuring that they have the correct mix of health and social care professionals to meet the needs of their local population who live with muscular dystrophy. PCT commissioners should consult the local stakeholders on their plans for commissioning.

My Lords, I declare an interest as a supporter of the NeuroMuscular Centre in Cheshire, one of the flagship providers in the charitable sector for people with serious muscle-wasting diseases. The well named Walton report refers to a lack of clarity and responsibility in the NHS for supporting services for people with these diseases. What pressures can be brought to bear on the one-third of primary care trusts in the north-west that refuse to provide any support to the NeuroMuscular Centre for the work that it does on behalf of their patients, while the other two-thirds of the PCTs are glad to do so?

The right reverend Prelate points to where we started with this Question, which is the patchy nature of some of the services. I am hopeful that, if our National Specialised Commissioning Team will work to set up the best practice commissioning workshop, we will attract people from across the country who are dealing with this issue and that we can encourage them to use the best practice.

Does my noble friend accept that there is a widespread problem of access to these services? There has been reference to the centre of excellence at Newcastle upon Tyne, which certainly is a centre of excellence. However, is she aware that those living on the west coast of Cumbria, for example, have to travel right across the United Kingdom to Newcastle to have access to those services? Is that really satisfactory?

I think that it is probably absolutely not satisfactory, which is why we have to attend to reviewing this and are calling on our local services to make sure that they provide local care at local level.