By signing our online Building on the Foundations Petition, you will be supporting our campaign in conjunction with leading clinicians, which calls on the Government and NHS to address the following concerns as a matter of urgency:

  • Recognise neuromuscular services as specialised services requiring a multi-disciplinary management of care;
  • Acknowledge that survival and quality of life of some patients with neuromuscular conditions is being compromised as they do not have access to specialist diagnosis and a multi-disciplinary package of care;
  • Pay particular attention to the significant geographical inequalities across the UK in access to specialist health services for children and adults with neuromuscular conditions;
  • Recognise that where excellent services are in place, they are vulnerable given their dependence on a handful of leading clinicians who in time may move on or retire;
  • Work with commissioners of health services and health professionals to improve current service provision across the UK;
  • Encourage Specialised Commissioning Groups in England to follow the lead of the South West Specialised Commissioning Group and undertake a comprehensive review of services for patients with neuromuscular conditions in their region;
  • Press the devolved assemblies and local commissioners of health services to ensure that all patients are able to access specialist diagnostic services and specialist multi-disciplinary services elsewhere in the UK to ensure adequate care and diagnosis for these complex diseases.

If you would like to support us on the above issues please sign the online Building on the Foundations Petition which will be presented to Number 10 Downing Street in May.

If you would like to get other people involved you can also download a printable version of the petition with space for plenty of signatures. Building on the Foundations Petition (220 kb) [pdf]