Access to symptomatic treatments and therapies
Acting to help people with MS includes working to help people deal with life now. Day to day management of symptoms is one of the most difficult challenges for people with MS and the MS Trust works on a number of fronts to improve access to drugs and other treatments that will alleviate these difficult and debilitating problems.
We are currently working to improve access to:
Functional electrical stimulation (FES) applies electrical stimulation to unresponsive or weak muscles and forces functional movement. To be suitable for the treatment, the individual needs to be able to walk, even if only a few metres with a stick or crutch. By wearing a foot switch triggered stimulator, the person with MS - with corrected dropped foot - can maintain use of walking muscles for longer.
Early on, the MS Trust recognised the value of FES and funded research to prove its clinical value for specific symptoms. In January 2009, NICE issued guidance that FES can be offered routinely as a treatment option for people with foot drop caused by damage to the brain or spinal cord if the doctor feels it is appropriate. This guidance applies throughout the UK.
There have since been some instances of centres seeking to withdraw or restrict FES provision despite the NICE guidance. Where we are aware of these issues, the MS Trust continues to ensure that health authorities are aware of their legal obligations. We have contributed to several local and regional reviews of FES services. In some cases, these reviews have resulted in a commitment to make FES available. In other cases, FES remains frustratingly unavailable. We will continue to work ensure that the relatively small number of people who would benefit from FES are able to access it. For those who benefits, the difference it makes to their walking, their independence and their sense of well-being cannot be underestimated.
Fampridine is drug that has been shown to improve walking speed for some people with multiple sclerosis.
Fampridine was granted a conditional licence by the European Medicines Agency (EMA), the European Union's regulator, in July 2011. The licence requires the manufacturer, Biogen Idec, to carry out further research about the benefits and long-term safety of fampridine. The drug is already licensed for use in the USA.
Fampridine is being prescribed in the UK but there are significant funding problems until NICE issues guidance. The MS Trust will work as much as we can to improve access to this drug which works well for some people, although not for all. If NICE does decide to evaluate this technology then we will work hard to ensure that they come out with a favourable decision.
The MS Trust Information Team hear many stories from people with MS who are unable to access Fampridine and so are unable to know whether the drug might benefit them. We will continue to work locally and nationally to try and improve access to this drug.
Bladder and bowel symptoms are unfortunately only too common in MS. The MS Trust has always recognised how significantly disabling and distressing these symptoms are.
Bladder and bowel symptoms are known as 'continence' problems and are far from unique to MS or to neurological conditions.
In August 2012, a new clinical guideline was issued which updates and replaces the recommendations on bladder problems and urinary tract infections found in Multiple Sclerosis (NICE clinical guideline 8). Urinary incontinence in neurological diease: management of lower urinary tract dysfunction in neurological diease (CG148) offers evidence-based advice on the care and treatment of people with urinary incontinence and a neurological condition.
The guidance was only issued in 2010 this is a rapid turnaround for a revision.
The update is not related to the safety or clinical efficacy of the drugs but to address ongoing uncertainties around the cost effectiveness of some of the recommended treatment options. The current guidance recommends the use of amitriptyline, a tricyclic antidepressant, and the anti-epileptic drug pregabalin as the first line management of neuropathic pain. The draft revised scope includes consideration of gabapentin as an alternative to pregabalin as a first line treatment.
The MS Trust is working to ensure a good outcome for people with MS, and you can read our response (.doc 46kb) to the initial scope.
Publication of the revised guideline is due in August 2013.
We know that getting the very best care can sometimes mean accessing very specialist care. Two areas where people with MS are often limited in what they can access are neurorehabilitation and neuropsychology.
The MS Trust, in partnership with the Royal College of Physicians, has undertaken a series of audits of MS services. These audits measure services against the standards laid out in the National Service Framework for Long-term Conditions and the NICE clinical guideline Management of multiple sclerosis in primary and secondary care (NICE CG8). In the 2011 audit, access to neurorehabilitation was shown to be very limited nationally. We continue to work to raise the profile of the need for very specialist services.
Recent research published in Way Ahead demonstrates the lack of access to these services experienced by the majority of people with MS. Equally, it illustrates the very positive impact that these services make. We work closely with the Specialist Healthcare Alliance to ensure that government policymakers are aware of the issues involved in commissioning and providing very specialist care.