Post Polio Syndrome consultation in Somerset

Conclusions

1. The majority of responses indicate the lack of GPs understanding of PPS symptoms and treatment available to support patients and some reluctance by GPs to learn more.
2. The members’ response to this is to find out about PPS themselves and then try to gain GPs confidence and understanding to help them gain knowledge and support the patient better or just look after themselves with minimal primary care input.
3. Regional specialists with understanding of PPS are few, so many people attend Lane Fox PPS Clinic at St Thomas’ Hospital in London for diagnosis, and management of the illness.
4. British Polio Fellowship has a major role to play in helping members (and potentially non-members) gain understanding of their health situation and living with it better. Support groups such as the Taunton group are helpful in this area.
5. 63% of members who responded to the project are under 75, 31% of members who responded were in 60’s, so their disabilities and Symptoms of PPS, although some can be related to old age, are affecting them even before and during the early years of retirement.
6. There is evidence of mental stress, depression, feeling of isolation and anxiety caused by the lack of proper and timely diagnosis and lack of willingness of GPs to accept the patient as more knowledgeable than themselves about PPS.
7. The orthotic service seems to need improvement.

This report was produced by the previous Healthwatch Somerset service provider, The Care Forum.