What is the MS service like in your area?
Open Door - November 2010 page 2
Campaigning for improvements to MS services is one of the MS Trust's objectives.
Early next year the MS Trust, in partnership with the Royal College of Physicians, will be undertaking the third survey of MS services in England and Wales and we would like you to take part.
In 2006 and again in 2008 the survey asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a series of questions based on the NICE MS management guidelines. The aim is to understand what services are available and to see how they meet the needs of people with MS.
Key recommendations of the NICE MS management guidelines
- Access to specialist neurological and neurorehabilitation services.
- A rapid diagnosis (no longer than three months from referral to completion of investigations) .
- A seamless service across health and social care.
- A service which is responsive to people with MS, who should be actively involved in decisions about their care and treatment.
- Sensitive and thorough problem and symptom assessment.
- Self-referral back into specialist services after discharge.
Previous survey results
The 2006 survey showed that there were some pockets of excellence, but in the main services for people with MS were poor. Services were not matching the quality or quantity recommended by national policies.
In 2008 over 1,300 people with MS took part and although access to specialist neurological services had improved, there were still long delays from GP referral to diagnosis, with 50% of people waiting over 20 weeks. In addition, the survey showed that access to neurological rehabilitation services remained wholly inadequate - only 36% of people with MS had access to such services.
The survey recognised that the inadequacy of symptom management could cause distress and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced.
One of the big concerns in both the previous audits was the number of people who had experienced skin pressure ulcers, 9% in 2006 and 6% in 2008. As well as being extremely distressing for the person concerned, the estimated total cost of treating preventable skin pressure ulcers in the UK is estimated to be £1-£2 billion, a significant chunk of the NHS budget.
The 2011 survey
The structure of the NHS is changing, but there will still be people in place who will commission, provide, monitor and definitely use MS services and it is even more important to get all of their views at this uncertain time.
NICE have also announced a review of their guidelines, however the key recommendations as shown above are still very relevant and unlikely to change.
Please help us by taking part in the survey - the more data collected, the more significant the results and the more pressure we can apply for services to be improved. If you live in England or Wales and you have been in contact with any NHS service (GP, hospital, therapist etc.) about your MS in 2010 please register to take part in our survey.
The survey is now complete and the results published in the summerof 2011. Thank you to everyone who took part