Gaps in muscular dystrophy care 'unacceptable'

Baroness Thomas of Winchester writes for ePolitix.com on her question to the government on what their response is to the Walton Report on Access to Specialist Neuromuscular Care. Skip related content

As a member of the House of Lords who actually has limb girdle muscular dystrophy, I took a particular interest in the cross-party group of MPs and peers in the all-party parliamentary group (APPG) for muscular dystrophy, chaired by Dave Anderson MP.

It has conducted an inquiry into access to NHS specialist care for the estimated 60,000 children and adults living with muscular dystrophy and related neuromuscular conditions in the UK.

Disturbing evidence from the Muscular Dystrophy Campaign of gaps in care, early deaths and poor support led to the inquiry, which has examined the need for specialist neuromuscular services in the UK.

The APPG has now published its findings in the Walton Report on Access to Specialist Neuromuscular Care, after eight months of receiving oral and written evidence from leading clinicians, researchers, patients and NHS commissioners from across the UK.

The expert evidence received by the group underlines the need for urgent action to improve and strengthen multi-disciplinary healthcare for this vulnerable group of patients living with rare and very rare conditions.

There are no cures and currently few effective treatments available for people living with one of these devastating conditions.

The group published evidence showing that second-rate care results in shorter lives and limited survival in this country, which is not acceptable.

The group has therefore brought forward a series of recommendations which call for prompt action to address the failings in services in this country.

The APPG has called for:

·Urgent in-depth reviews of neuromuscular services to be undertaken in each region by NHS Specialised Commissioning Groups that have not already completed or are currently conducting a review;

·A named muscular dystrophy lead, to be responsible for service development in each of the ten NHS Specialised Commissioning Groups in England and the three devolved countries;

·All patients living with muscular dystrophy or a related neuromuscular condition to have access to support and information from a care advisor;

·The establishment of a NICE clinical guideline for muscular dystrophy;

·An urgent review of workforce needs and professional development.

The APPG is therefore seeking a response from the government to address the recommendations put forward in the Walton Report so that action can be taken to improve services for people living with muscle disease.