Healthcare

Baroness Thomas of Winchester Excerpts

Thursday 28th October 2010 Lords Chamber

[Baroness Thomas of Winchester]

My Lords, with so little time for niceties or an introduction, I shall concentrate my remarks on the management of those with muscular dystrophy and therefore declare my usual interest. I know that my noble friend the Minister has in the past attended the all-party group here in the House, which has endeared him to all those working in this particular field. I wonder whether he would be prepared to meet the group again soon in his new role to discuss some of the issues that I shall mention today and some which there is no time to mention.

Some 60,000 children and adults in England are affected by one of more than 60 different types of muscular dystrophy. These are rare or very rare conditions that weaken and waste muscles. They can cause lifelong disability and, in some cases, premature death. There are currently no cures or treatment and, without multidisciplinary care, most patients and their families experience a further reduction in the quality of life and, for some conditions, shortened life expectancy.

The Muscular Dystrophy Campaign, in its responses to the White Paper consultations, has welcomed the proposed NHS commissioning board for specialised services and believes it to be a necessary step towards a national neuromuscular service for those with these neglected conditions. We urge the Government to make sure that the board is well enough resourced to ensure that all who need care can access it wherever they live.

As for GP commissioning, it is clear that GPs simply do not have the knowledge, experience or patient numbers to commission services for these extremely complex and rare multisystem disorders, some of which affect just a handful of patients in the country. In addition, these are costly low-volume services, so regional commissioning is essential to share the cost among a larger population base. Currently, many people living with these conditions are denied both essential and specialised care, such as respiratory care, and non-specialised care, such as physiotherapy or hydrotherapy. It all depends where they live. The all-party group revealed in the Walton report published two years ago that this postcode lottery has had devastating consequences. Young men with Duchenne MD die on average 10 years earlier in some parts of the country than in others simply due to a lack of specialist care.

Not only is that inconsistent access to care needlessly damaging lives and families, but it is costing the health service a huge amount of unnecessary money. It is estimated that the NHS last year spent a shocking £68 million in England on unplanned emergency hospital admissions. Clinical audit data have shown that such admissions could be greatly reduced through the provision of specialist multidisciplinary care.

Spreading knowledge of the conditions that I have mentioned would be greatly enhanced if there were a new National Institute for Health and Clinical Excellence quality standard for Duchenne muscular dystrophy based on the internationally agreed standards for care published by TREAT-NMD in the Lancet Neurology, a course of action that I hope the Minister will endorse.