Facing multiple sclerosis: a united approach
Wendy Hendrie gives her expert perspective on the challenges faced by people with MS, their families and carers, and how the NHS should support them with specialist care and more effective drugs.
The experience of having multiple sclerosis (MS) is different for each person, but one of the most common adjectives used when describing the condition is ‘frustrating’. This frustration arises not only from the loss of independence, but also from the unpredictability of the disease trajectory. Not knowing if or when another relapse will happen can place a huge psychological strain on people with MS, as well as their family and friends. Frustration can also be the overriding feeling when, after months of recovery following a relapse, people go back to square one when a new relapse strikes. With more effective disease-modifying treatments and earlier intervention, the uncertainty of not knowing how rapidly they will deteriorate has been diminished for some people. However, it remains a source of constant anxiety for many, especially those diagnosed with progressive MS.
MS often leads to a complex array of symptoms which can impact on every aspect of life. People with MS, and those close to them, therefore, need ongoing health and social care support to help them manage this condition and lead a life which is as normal as possible.
What do people with MS need in terms of support beyond drugs?
There are five main things that people with MS need beyond drugs:
1. Information, education and advice
2. Ongoing support to self-manage
3. Help to remain occupied
4. Access to health and social care professionals with expertise in MS
5. Comprehensive guidelines and policies.
Information, education and advice
Ideally, people with MS are given information and advice at diagnosis and then throughout the course of the disease. The MS Society and MS Trust produce excellent booklets on all aspects of MS and the MS Society’s ‘Getting to Grips’ courses educate newly diagnosed people and their families about many aspects of living with MS. People with MS also need access to someone with expert knowledge, throughout their lives, who can provide the education they need and translate information into something that is meaningful to them and the situation they are facing.
Ongoing support to self-manage
In a typical year, most people with MS only have contact with health professionals for a few hours. Therefore they need the knowledge and skills to manage their condition proactively on a day-to-day basis themselves. For many years, health policies have stressed the importance of self-management, but there is still a lack of consensus on how this should be achieved effectively in a health service that is becoming increasingly reactive.
Health professionals may need to put more emphasis on ‘management’ rather than ‘treatment’ where skills and knowledge are passed to the patient, their family and carers. Technology such as telemedicine, Skype or text could be used more so that people can be supported to self-manage. Many people with MS have similar problems and providing specific symptom management courses could enable health professionals to reach more people and encourage a more self-managed approach.
Help to remain occupied
In this context, ‘occupied’ refers to everything we do. It’s not just employment, but all of the everyday activities people engage in; it is these occupations that give people self-esteem and self-identity. Many people with MS give up activities soon after diagnosis, often because of fatigue, and then fail to restart them.
Not only do they give up work prematurely, they also stop doing many of the things that make them who they are. People define themselves by their roles: good cook, sporty, hands-on father etc. When these are eroded, which they often are in MS, people struggle to cope with a diminished sense of who they are and can, as a result, become depressed. A lack of occupational purpose, coupled with decreasing mobility or poor balance, can mean that people often sit for long periods of the day. This invariably leads to secondary deconditioning, which can accelerate disability. Care must also be taken to ensure that equipment given to make life easier doesn’t inadvertently take away functional ability e.g. the overuse of perching stools may mean that the person is not using their balance muscles in standing.
“Encouragement and support to stay active is probably one of the most important interventions for a person with MS”
Encouragement and support to stay active, therefore, is probably one of the most important interventions that a person with MS can receive. This is not easy, however, as compliance with exercise, even for the general population, is not good. People should be encouraged, therefore, to incorporate exercise into everyday activities which are meaningful to them. Activity has to be ‘sold’ not necessarily as something that will make people better, but as a way of staying as good as possible, i.e. done for the same reasons as we clean our teeth.
Access to health and social care professionals with expertise in MS
People with long-term conditions need long-term support and easy access to a named person who is part of an integrated neurological team with expertise in MS. Self-referral is key to enable people to continue with their lives with as little disruption as possible. Annual reviews (NICE MS Guidelines 2014) are also important as people with MS do not always realise when things have deteriorated.
Increasingly, specialist teams in the NHS have been under threat. The argument has been that specialists are unable to see the larger picture, but in my experience the opposite is true. Most specialists begin as generalists, but it is only their in-depth knowledge and experience of the complexities of a condition such as MS which allows them to be effective and to give the patient the best outcome.
A typical scenario
A patient with MS has an increase in his spasms which cause him to feel unsafe when walking and has led to falls. He could be seen by a number of health professionals:
1. He visits his GP who may increase his anti-spasticity medication. This could reduce the spasms but may also make him weaker, tired and unable to work, or more prone to losing his balance and falling.
2. A generic physiotherapist may stretch his legs or give him an exercise regime, but stretching may only give him temporary relief and he is probably not going to do the exercises because he is too tired or finds complying with exercise routines difficult.
3. A specialist therapist with expertise in MS will try to find out why the spasms have increased, in the knowledge that many factors can trigger them, such as infections, skin damage, constipation or poor posture. They may find that the person has an in-growing toenail and, once this is treated, the spasms subside. They can also review or titrate the anti-spasticity medication if necessary to ensure that the person is receiving the appropriate dose and educate them about triggers so they are aware of these in the future.
Specialists are, arguably, necessary and more effective in all areas of health. However, there is currently no consensus on the skills and knowledge that a person needs to be a specialist and little evidence to support the work they do. Although, as far as evidence goes, it does seem bizarre that specialist nurses and allied health professionals have to justify their existence when most people would accept that a brain surgeon would be more effective than a GP at removing a brain tumour. However, the MS Trust and Therapists in MS (TiMS) are currently gathering this evidence (GEMSS project) and developing competencies for specialists.
Comprehensive guidelines and policies
The health world is suffering from a plethora of guidelines and policies. However, what people with MS and clinicians need is one set of integrated guidelines, written by people with MS and clinical experts and underpinned by evidence from randomised controlled trials (RCTs) to expert opinion, so that health and social care professionals have a ‘bible’ care framework which can be standardised and audited. In many respects, the 2003 NICE MS Guidelines ticked many of the boxes, but the re-written 2014 version, although good in parts, is fragmented and does not describe a service model.
At NHS Trust level, policies need to be in place that ensure staff are continually improving their knowledge and skills and take into account succession planning to ensure the continuation of services. In some areas, the transference of expertise from highly skilled therapist to novice has been undermined when senior therapists are taken from the clinical setting and put in the meeting room, leaving them less time to pass on their expertise.
What works for MS and what gaps need filling?
Much of the recent research in MS has looked at the effectiveness of disease-modifying treatments, and results are promising to date. However, this is of little comfort to people with secondary progressive disease or those struggling with symptoms. Research into therapy interventions is patchy, probably because it is much harder to conduct robust trials when testing therapy interventions as they are complex and blinding is difficult.
Good quality studies do exist for physiotherapy, however, and the consensus is that exercise can improve mobility and balance. A recent study has also shown that moderate, progressive resistance exercise can help to reduce fatigue.
More work is needed on interventions that help with symptoms such as spasticity and ataxia, as well as on different ways of working such as the role of technology in supporting people with MS. Research must also be pragmatic, i.e. translate easily into clinical practice and with a qualitative element that examines acceptability and compliance.
How can drugs help?
With each passing year, drugs appear to have an increasing role in the management of early MS. Disease-modifying therapies can slow disability and reduce relapses, but many have side effects and not everyone is able to tolerate them. Steroids are used for treating relapses but there are still problems with differentiating between a relapse and another cause of worsening symptoms.
A variety of drugs is available for symptom management, relieving some of the common ones, such as neuropathic pain or spasticity. However, all come with potential side effects and there is a need to ensure that these do not outweigh the benefits. Patients can also be left on repeat prescriptions of drugs long after symptoms have subsided. They can have debilitating effects on function and energy levels which can be wrongly blamed on the MS.
Drugs for conditions such as spasticity and neuropathic pain should be manufactured and prescribed in small enough doses to allow flexibility when titrating in order to keep side effects to a minimum. People with MS need information and education in order to take control of their medication levels and health professionals other than doctors need to become supplementary or independent prescribers to ensure that drugs are used optimally.
About the author:
Dr Wendy Hendrie is a specialist physiotherapist in MS at Norwich MS Centre and co-chair of Therapists in MS (TiMS).
She qualified as a physiotherapist from The London Hospital in 1980 and for the past 30 years has specialised in the management of multiple sclerosis (MS) and complex neurodisability.
She has worked in the NHS, on Younger Disabled Units and in MS therapy centres.
She completed a Master’s degree in 2000 and her research investigated how well people with MS complied with home exercise regimes. In 2012 she completed a PhD examining the physical and psychological effects of regularly using a standing frame in the homes of people with severe MS.
She was member of the NICE Guideline Development Group for MS and is undertaking further research, with the University of Plymouth, into the effects of regular standing.
Wendy Hendrie is one of the judges for the upcoming QuDoS in MS Awards, on which pharmaphorum’s healthcare partners brand and the MS Trust are partnering. Established to recognise quality in the delivery of services in MS, the programme is open for entry to teams and individuals working in the field. Visit www.qudos-ms.com for further information and follow healthcare partners on twitter @pharmaphorumhcp and #qudosms for updates on the Awards.
Read more on multiple sclerosis: