There has been no improvement in the care of people with multiple sclerosis (MS) in the past five years, a report claims.
A national audit of services for people with MS in England and Wales claims clinicians are failing to adequately treating pain symptoms and control fatigue and cognition problems associated with the condition.
The Royal College of Physicians (RCP) found mobility problems "appear not at all well managed" as 79% of MS sufferers surveyed reported a fall in the last year with only just over half receiving they mobility equipment they needed.
NHS organisations also stand accused of not giving much management priority or resources to services for people with MS.
Specific managerial interest in services for people with MS and all related specialist services was found by the audit to be "generally less than 50%", with organisations "rarely monitoring whether the quantity of service provision is adequate".
"Services that are commissioned on a broad basis (i.e. without regard to the underlying conditions of the people using those services) are failing to provide adequate services to people with MS, and clinical staff are possibly failing to recognise clinical needs," says the audit.
One third of GPs admitted to the RCP that they either cannot or do not know whether it is possible to refer to organisations that assess, provide and train patients or others in the use of equipment/adaptations needed by people with MS.
While the audit found 38% of community trusts are providing specialist neurological rehabilitation services – a figure in line with national guidelines – the RCP argues this still equates to inadequate service provision across the NHS.
Furthermore, one third of trusts have no plans to improve neurological services in the forthcoming year.
"This report highlights the need for new commissioning boards to deliver co-ordinated services across the health and social care interface for people living with MS," said Janet Davies, Executive Director of the Royal College of Nursing.
"These services can provide vital support in helping people with MS and their families live and work with a disease that affects different people in different ways.
"It is worrying that so little progress has been made in this area."
Davies warns that it is "vital" the arguments in favour of retaining specialist nurses "are not disregarded in an attempt to make quick savings".
The RCP recommends organisations involve people with MS in the design and provision, or the commissioning, of any services that are used by people with MS
They are also advised to routinely record the frequency and extent of unmet need for equipment for people with MS to commissioning organisations.
We asked how important is it that specialist nurses are retained amid budget cuts? Your comments (terms and conditions apply):
"We need interventional vascular surgeons to do CCSVI and sativex which none of us can get. Clinical trials is rubbish have had 2 other procedures done NOT clinically trialled yet given to me. The last one I nearly lost my life to. CCSVI is very very undangerous to do and takes just 45 minutes also. So NHS are making no sense" - Lynne Heal, Leicester
"It is of benefit to both the MS suffered and the NHS that there is a point of contact to discuss the different methods of treatment available to different people as the is no cure nor is anyone looking for a cure. I personally know of 2 people who have died of an related illness - the same number who have died from cancer over a longer period of time. The first
point of contact is the nurse she is of benefit to the consulated as well as she knows the patient and their particular form of MS" - J Doe
"It is absolutely vital. Pain care from the so called Pain Clinics is a sick joke when they cannot understand the extent and the levels involved. Without the assistance of these nurses the only rational answer is a visit to Dignitas but I expect that they will be cut to make rapid savings from those who have little energy left to protest loudly" - R Stoker, Torquay
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