Summary

 

MS Society Cymru welcomes the opportunity to provide feedback on the National Assembly for Wales’ Health, Social Care and Sport Committee inquiry into loneliness and isolation.

 

Multiple Sclerosis (MS) is an incurable neurological condition, which affects approximately 4,900 people in Wales, and more than 100,000 people in the UK.

 

Around 85% of people with MS are diagnosed with Relapsing-Remitting MS. People with this kind of MS have distinct attacks of symptoms which then fade away either partially or completely.  Many go on to have secondary progressive MS. It means they have a sustained build-up of disability, completely independent of any relapses. Primary progressive MS affects about 10 to 15% of people diagnosed with MS. Symptoms gradually get worse over time, rather than appearing suddenly.

 

1.    Social isolation and loneliness among people living with MS

1.1. Social isolation and loneliness is a significant issue for people of all ages who are living with MS in Wales. In particular, people living with more progressive forms of MS have reported feelings of isolation as a consequence of their condition.

1.2. Social isolation among people living with MS can occur in all types of settings, from rural areas to larger urban conurbations. If someone cannot easily leave their house, they are at higher risk of being socially isolated whatever lies beyond their doors.

1.3. In 2014, the MS Society UK in collaboration with Plymouth University conducted research on social isolation among people severely affected by MS.[i] This study found;

1.4. Physical restrictions were the most commonly mentioned causes for social isolation. Participants described the difficulties they face in trying to get out and make or maintain contact;

1.5. “…the adventurous side of my spirit that used to take me out and about… because of various difficulties and physical constraints have made me isolated, 90% of what I do is in my own home environment”.

1.6. “I’m in my home on my own for most of the week, and I’ve started to really struggle and feel unbearably lonely. I’m not able to get outside of my home on my own and only have 4 hours care a week”.

1.7. For someone living with MS, the ability to leave their home and move independently is a complex undertaking. Whilst mobility aids can help to facilitate people living with MS to get around, many who use them report that they are often difficult to use and generally still require assistance from others.

1.8. Difficulties encountered with pavements, accessing buildings such as shop entrances and general accessibility issues etc. prevents people living with MS from accessing the outside world. Consequently, people living with MS are disabled by virtue of the fact that the built environment prevents them from accessing it and as a result are isolated in their own homes.

1.9. Whilst social isolation and loneliness affects people living with MS regardless of where they live, the issue is particularly compounded for those who live in rural areas.