Healthcare experiences

[zubin]

Hi,
I hope you don't mind me invading this topic. I work for a self advocacy charity for people with learning disabilities and am currently undertaking some work examining the extent to which health care services (focusing initially of GP's and hospitals) meet the needs of people with learning disabilities and their families. I am working with 200 people with ld's in my local area and over 300 local parent/carers, but I was really hoping to get wider responses so we can look at comparing the services available here (Lincolnshire) to other services with a view to offering best practice suggestions.
Some examples of the type of things we are interested in are - whether you as a parent/carer feel that your childs GP really understands their condition, whether you get to see the same GP regularly (this is a particular problem to many of our service users), whether good quality medical help and support is readily available for your child or whether you feel you have to fight to get them what they need and deserve, if your child has had to stay in hospital how well they were treated (both physically and emotionally) etc. I am particularly interested to hear any views on the effect of potential closure of hospital facilities/the NHS cash crisis may have on people with learning disabilities and their families. If you have any particularly good or bad experiences to share that would be really useful? This information will be included in a report that will go to local service providers - obviously no names etc will be included in the report.
Thank you very much for your time, if anybody would like to know more about the organisation for which I work (Registered charity number: 1092072) please contact me on my personal email [email protected] (office email only works when it thinks it will). If people would prefer to respond via email rather than a conversation on here that is fine.
Helen

[Davros]

We've had both good and bad experiences. We have great GPs and have had mixed experiences of hospital appts/treatment. It would take me a long, long time to give full details here so how would you go about it without it taking forever?

[zubin]

I have a questionnaire that we have produced for parents/carers that I could email to anyone who would be willing to fill one in