The word ‘transformational’ gets bandied around a lot, about all manner of things – some of which don’t necessarily warrant such superlatives. But we are not afraid to use it when talking about the Advanced MS Champions Programme, as we truly believe it could be life changing for the thousands of people living with advanced MS.
The programme will fund six Champions in different sites across the UK as part of a three-year pilot starting this year. You can read more about the programme, what advanced MS is and the role of the Champions here, but in this blog we’re focusing on the difference they’ll make day to day for people living with some of the most debilitating symptoms of MS.
Joining up the dots
Let’s be honest, the world of health and social care can be really confusing, and it’s easy to feel overwhelmed by all the different services out there. With an Advanced MS Champion by your side, there’ll be someone there to help join the dots, to break down those barriers and ensure people with advanced MS get access to the specialist services they need when they need them. This might include physiotherapy, occupational therapy, respite care, social care and palliative care. The care map below shows some of the different specialists a person with advanced MS might need to access, and highlights the difficulties informal carers may face coordinating care from up to 19 different specialists.
Symptoms of advanced MS are complex and debilitating, and may include mobility and balance problems, severe pain, fatigue, difficulty swallowing, spasticity, bladder and bowel problems, and loss of memory. Performing the kind of daily tasks that many of us take for granted – making a cup of tea, taking a shower, eating dinner – can be a struggle, and specialist care and support is absolutely vital. MS nurses do an amazing job, but with so much of their time heavily skewed towards administering and monitoring the increasing number of disease modifying drugs, add on to that the burden of working within an increasingly-pressured NHS, the care for people with advanced MS can be under resourced, leaving many to deal with frightening symptoms alone. An Advanced MS Champion will be able to offer specialist guidance to help people manage specific MS symptoms, for example training to avoid choking or practical tips for coping with fatigue. This individualised, proactive care should mean fewer health complications and hospital admissions.
Easing the burden
Research has shown us that people with advanced MS too often have to rely on friends and family for help and support. This may put pressure on relationships; people with MS might experience feelings of guilt and carers might struggle to cope with both the physical and emotional demands it can bring. Advanced MS Champions will relieve some of this burden. They’ll ensure there’s support and guidance for a carer as well as the person with MS - be that through helping to organise a short respite break, taking the lead on those difficult conversations, or signposting families to the organisations that can help ease some of the pressures.
People who have lived with MS for a while often say that, although they have MS, MS does not have them. Advanced MS may, at times, feel all consuming, so being able to live as independently as possible could make a world of difference. A Champion will be able to help introduce practical things to make this a reality, for example walking aids or house adaptations.
The Champions will be specialists in their field. They’ll know the needs of people living with MS and their families, and be able to pass on their knowledge and skills to other health and social care professionals through information resources and training. A greater understanding and awareness of advanced MS and what it means to live with it, both in the health community and the general population, can only be a positive thing moving forward.
Perhaps most crucially of all, for people with advanced MS, feeling like they have no where to turn, the Champions will bring hope.