A survey of services for people with multiple sclerosis (MS) shows that the NHS is still failing to implement the 2003 The National Institute for Health and Clinical Excellence (NICE) guidelines on the management of MS patients.
The audit, carried out by the Royal College of Physicians' Clinical Effectiveness and Evaluation Unit (CEEu) and the MS Trust, asked people with MS, hospital trusts, primary care trusts and the strategic health authorities a series of questions based on the six key recommendations and one quality marker of the NICE guidelines.
The survey shows that access to neurological rehabilitation services remains wholly inadequate – only 36% of people with MS had access to such services.
This is unacceptable, says the MS Trust. For people with MS, it is the inadequacy of symptom management which causes distress, and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced.
Although access to specialist neurological services has improved, there are still long delays from GP referral to diagnosis, with 50% of all patients waiting over 20 weeks.
The survey also reports that 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months.
Professor Ian Gilmore, President of the Royal College of Physicians, said: "It seems incredible that after five years we are no nearer to commissioning the full range of services that MS patients need and deserve."
Christine Jones, Chief Executive of the MS Trust, said: "If you have MS and you have access to the services you need, you are in a fortunate position. Unfortunately it is still a matter of geographical accident. The postcode lottery is about basic services – continence, prevention of pressure sores, being assessed for the right wheelchair if you need it, pain relief. Quality services should not depend on the accident of finding a doctor or a nurse who really understands and responds to your needs. It should be built into the commissioning structure of the NHS – and it is not."