Health: Neuromuscular Services

Baroness Wilkins Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Wilkins]

My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for securing this debate and I congratulate the All-Party Parliamentary Group for Muscular Dystrophy—and particularly the noble Baroness, Lady Thomas, for her part in it—on its excellent work in putting such a clear focus on the current significant gaps that exist in neuromuscular care services and the improvements that are required.

The noble Baroness, Lady Thomas, has given us an excellent overview of the current situation and the positive steps being taken by the Department of Health to address the problems. However, we are living at a time of great upheaval in the NHS, much of which already seems to be under way, even though the underpinning legislation has not been fully debated, let alone passed. Therefore, how can we ensure that any improvements will be maintained?

I should like to talk about my concerns in relation to the sub-national structure of the proposed new NHS Commissioning Board and the commissioning of specialised services, which, as we have heard, are crucial for people affected by neuromuscular conditions.

As we have heard, significant progress has been made regarding improvements to neuromuscular services with an increase in the number of muscular dystrophy care advisers across England. I welcome the fact that all 10 specialised commissioning groups either have reviewed or are reviewing services for people with neuromuscular conditions, and that vital work is under way to improve access to specialised neuromuscular services. This work must be maintained in a structured approach as the new NHS Commissioning Board undertakes commissioning of specialised services.

Currently, neuromuscular services are commissioned on a regional basis by the 10 regional NHS specialised commissioning groups, with top-slicing of the PCTs. This method of commissioning these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society, which is a multidisciplinary forum of consultant-level experts on muscle disease, myasthenia gravis and spinal muscular atrophy. What will be the regional boundaries and structures that will be created under the new NHS Commissioning Board? Will the Minister also say how the transition to the new commissioning arrangements will be managed? Can he give an assurance that the development of neuromuscular services will not be interrupted by the changeover to the new commissioning set-up?

As I said earlier, the work of the all-party parliamentary group has been outstanding in focusing attention on the service. At a meeting earlier this month, Teresa Moss, director of the National Specialised Commissioning Team, outlined ground-breaking steps towards a national neuromuscular services plan, which is a hugely welcome development for people affected by muscle disease across the country. As she said:

“I am pleased to share the good news that a national working group has been set up, with representatives from each of the SCGs across England as neuromuscular services will be a priority in next year’s work plan for the ten Specialised Commissioning Groups and the National Specialised Commissioning Team.

This is the first time that a coherent, national approach has been taken with regard to the planning and coordination of specialist neuromuscular services and I look forward to working with the Muscular Dystrophy Campaign, clinicians, commissioners and people living with muscle disease across England to take this important work forward”.

In the light of that, will the Minister outline how the Department of Health will publicise the details relating to the national neuromuscular services plan to the relevant health professionals throughout the service and, most particularly, how it will publicise details to people who are affected by muscle disease?

Finally, the Muscular Dystrophy Campaign has serious reservations regarding the impact of the proposed move to GP commissioning for non-specialised primary and secondary care for the 60,000 children and adults in England with muscular dystrophy and related neuromuscular conditions. Will the Minister clarify how specialist services commissioned by the NHS Commissioning Board and more generic services commissioned by GP consortia will link together?