30th May 2019 is World MS Day, bringing the world together to campaign with everyone affected by multiple sclerosis.

MS is an autoimmune disease of the central nervous system that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

It's a lifelong condition that can sometimes cause serious disability. In many cases, it's possible to treat symptoms. Average life expectancy is slightly reduced for people with MS.

It's most commonly diagnosed in people in their 20s and 30s, although it can develop at any age. It's about 2 to 3 times more common in women than men. MS is one of the most common causes of disability in younger adults.

Here is a client story showing how POhWER has helped someone with advanced MS.

Ruth’s Story

When Ruth was referred to POhWER she had been living at the nursing home since March 2005. She is 57 years old and in the late stages of MS. Ruth spent most days in bed. Her family no longer visit.

When Laura, the POHWER advocate, visited Ruth, the manager was unable to elaborate about why Ruth didn’t get out of bed and what activities she was able to take part in. Laura was told by carers that she gets out of bed on Mondays, Wednesdays and Fridays. When staff talked about Ruth they used dismissive and depersonalised language, one carer said ‘we are short staffed, we don’t get it up when we are short’.

On the second visit, after trying to establish what was happening, Laura was informed that Ruth didn’t have a specialist wheelchair. This prevented her from being able to go out in the community or access the garden. The home had not been proactive in placing a referral for Ruth to be assessed for a wheelchair.

Ruth was unable to communicate her feelings, except by smiling. Laura used her reactions to staff and activities, to identify what she enjoyed and didn’t. Through trying different things, Laura was able to support the activities coordinator to think about what activities Ruth may like and then to document what she enjoyed.

Laura spent time with the management and activities coordinator on every visit, thinking and talking about:

  • Meaningful activities for Ruth to do in her room.
  • Ensuring Ruth is offered the opportunity to get up every day, unless there is a medical reason or Ruth becomes agitated. This is now fully documented.
  • Community activities that would give Ruth a sensory experience.
  • How Ruth could be involved in activities in the residents lounge.

The manager then spoke with staff at the team meeting about Ruth’s needs and this was followed up in the daily handover meetings.

Ruth now gets up practically every day. When there are activities on in the lounge, the activities coordinator sits next to Ruth and talks to her about what is happening. Recently, when they were playing the card game – ‘higher or lower’, Ruth shouted ‘higher, higher’, which was the first time she had used any words in context for a long time. Previously, at lunch time Ruth was left in the conservatory (she is PEG fed), however now they put music on or something she might like to watch on TV. She enjoys listening to Victoria Wood songs and Pam Ayres short stories. Ruth now has a specialised wheelchair and is able to regularly access the garden. Recently, Ruth enjoyed the sights and sounds of the seaside, when she walked along the promenade with a group of other residents and accessed the beach by a paved area. Further trips into the community are being planned for the future, including a concert and a trip to the sea life centre. On Laura’s last visit staff had bought Ruth make-up and perfume and she appeared to enjoy having these. When the advocate commented that Ruth looked really pretty, she smiled broadly.

The manager felt that staff had lost sight of who Ruth was and were focused on caring for her basic needs. The advocate’s involvement has highlighted how important person-centred care is, and emphasised the significance of not losing sight of Ruth as an individual.