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Raising Awareness and support for those with Multiple System Atrophy (MSA)

Multiple System Atrophy (MSA) is a relatively rare neurodegenerative condition that may affect anyone from the age of 30 years old, though most commonly people are in their mid-50s when diagnosed. There are thought to be around 4000 people at any point in time across the UK and Ireland who have MSA.

Someone who has MSA will have a combination of Parkinson’s like symptoms, with Ataxic symptoms and autonomic dysfunction symptoms, the degree and range of each of these for any one person with MSA is very individual. The Parkinson’s-like symptoms may cause slow, stiff movements, and difficulty getting moving. The Ataxic symptoms may result in changes to speech, balance, and co-ordination. The autonomic dysfunction may cause problems with blood pressure control, breathing, bladder function, bowel function , temperature control and sleep.

The degenerative nature of MSA means that over time the movement centres in the brain and autonomic centre become increasingly atrophied resulting in progressive disability for the person.

MSA is a life limiting condition both in terms of shortening the potential life span of the person with MSA and in terms of severely limiting the way they can function and live their daily life.

People affected by MSA face numerous challenges, including a lack of awareness and knowledge of the condition, not only among the public but also among health professionals. This increases the feeling of isolation experienced by many people with MSA, given the perceived lack of empathy for the challenges MSA causes them and the severity and complexity of the condition they are dealing with.

Ability to communicate is often impaired from early in the MSA experience so adding to the potential sense of vulnerability, social isolation and loss of identity that speech gives us. The loss of movement and co-ordination also impacts on their ability to utilise other forms of communicating so the person with MSA can lose autonomy and truly feel they are not heard, and their needs not understood.

The relentless progression of the condition results in the person with MSA having to constantly readjust psychologically as well as physically to reduced capabilities and loss of function; whilst being aware of the increasing need and dependence on physical and practical help and care. The impact of having MSA reaches beyond the person and their immediate spouse / carer to the wider network of family and friends.

It is tough enough for the person with MSA having to accept that they need professional care support and various aids and equipment to manage the most basic of daily tasks and bodily functions, but currently it is even tougher having limited or no choice about that care.

Workforce and recruitment issues means many of the crucial neuro therapy services are depleted of skilled and experienced staff, with reduced budgets constraining timely assessments and provision of essential aids and equipment to enable safe management of care.

Even where care assessments have taken place the ability to source carers especially in community settings means partner / spouses are trying to meet ever increasing complex care needs alone or with very limited support and poor flexibility to be genuinely helpful.

Many nursing homes lack the capacity to support people with MSA and their unpredictable changing needs; plus, many people with MSA are not of an age where they are eligible for nursing home placement or where it is appropriate or desirable.

MSA is an incurable condition with persistent deterioration that requires palliative care. The whole management focus is to manage existing and new symptoms as they occur as optimally as possible and maintain as good as quality of life as possible. Skilful and regular review is required as the range and inter-relatedness of symptoms means improving one problem can cause another to worsen e.g., Parkinson’s medications may improve some of the mobility issues initially but if the person is having significant blood pressure drops these medications will make this worse. Constant mindfulness of the implications of management options and the individual’s vulnerabilities and particular set of symptoms is required.

Without access to this appropriate support crises occur and result in admission to hospital – whilst the acute cause e.g., a fall or infection, will be treated the overall stability of the person and their MSA management invariably deteriorates during an acute admission as rarely is there the staffing capacity or skillset to meet the underlying needs.

The Multiple System Atrophy Trust (MSAT) is the only organisation working to support people with Multiple System Atrophy (MSA), their families, carers and supporting health and care professionals across the UK and Ireland.

Our MSA Nurse Specialist covering Scotland is myself, Katie Rigg and I welcome contact from anyone affected by MSA and healthcare professionals supporting them.