Health services for women with learning disabilities in Newham

Healthwatch Newham supported Powerhouse for Women, a women’s only charity based in Newham, East London which aims to empower women with learning disabilities, to run a project that would: enable Women with Learning disabilities in Newham to learn about leading healthier lifestyles; discuss their concerns and share their ongoing experiences; and to produce a report on the current experiences of 3 services: GP’s surgeries, blood tests and Newham Hospital. 40 members of Powerhouse for women took part in the research, all of whom have learning disabilities, ten women were accompanied by support workers.

It has been observed at Powerhouse that the women they support are often left to live with severe pain, that their complaints are not always taken seriously, that checks such as chest x-rays do not take place and that some members are not even able to make appointments with their local surgeries.

The research found that in general, GP’s surgeries were delivering a good service. Most of the women in the group were supported to make appointments or, if they had their own mobile phones, were able to make appointments themselves. However, making appointments is one of the biggest issues for the women without support workers, who do not have phones of their own. These women will go to the surgery to get an appointment but are told to phone at a certain time in the morning and because of this, it often takes 2-3 weeks for them to get an appointment. Over half of the women spoken to reported feeling that they were not given enough time to discuss their health issues with their health professional.

All of the women had had blood tests. In general these have been well explained by the doctors, and the women reported that they had understood instructions , for example: around fasting. However for some of the women, especially those on the autistic spectrum, blood tests and other tests such as smear tests, were not being explained well enough and could raise anxiety to a level where the tests would be avoided completely.

Half of the women spoken to have had to use A&E Newham General, for epileptic fits/other seizures/heart related episodes with mixed experiences. For ongoing conditions such as diabetes and asthma the care received has been good, although nearly half of the groups felt that people with a support worker received a better service.

Recommendations are made around further training for health professionals on how best to help people with learning disabilities engage with health services, making it easier for those without phones to book an appointment in person at the surgery, to give a better support when doing blood tests especially to those on the autistic spectrum, and for a further review of Newham General Hospital and the service they are offering to people with learning disabilities.

It is unclear if the recommendations have been passed to any services, and there is no provider response included.