User involvement – how has it worked for you?

[Samantha]

As policy officer in the external affairs team at the Alzheimer's Society, I would like to hear from you about your experiences of user involvement in local NHS or social care services. This could be acting as a representative from the local Alzheimer’s Society, as an individual, or supporting individuals with dementia or carers to get involved. Do you think user views were properly considered and influenced service development? Do you have suspicions about ‘tokenism’? What about the practicalities of ‘user involvement’ – were meetings arranged to support user involvement?

If you have any views about this, please get in touch. I am collecting views to inform a short report I am preparing on the topic.

Thank you.

 

[Lila13]

I'm not sure I've understood the question. I tried phoning AS several times but never got through. I could repeat a lot of our experiences with NHS and SS but don't know how much of that is relevant to you.

Lila

 

[Samantha]

user involvement

Sorry for not being clear. Rather than experiences of trying to get/receiving services from social services, I would really like to hear if people have any experience of being involved in the development of local services. For example, social services may be developing a new home care service and want to hear from carers or people with dementia about what type of service would be most helpful. Patient/public involvement is a hot topic at the moment, but it needs to be done well so that people feel they are actually influencing decisions and not just there as a 'token carer'.
Thanks
Samantha

 

[Skye]

Hi Samantha

Not sure if this is what you are looking for, but we have a local branch of User & Carer Involvement here. Their national website is www.userandcarer.co.uk.

A couple of weeks ago they asked my husband and I to go to the hospital to talk to post-graduate students about living with AD. In fact, most of the consultants were there as well.

Most of the students had no experience of AD, (I asked), so hopefully they got something out of it. Most of the post-talk questions came from the consultants, but they knew what to ask, so it was quite interesting.

If this is of any interest to you, I can give you the address of our local organiser.

Cheers, Skye

 

[Skye]

PS

Midnight afterthought!

A couple of years ago UCI manager came to our AD support group to tell us about upgrading our MH unit, they wanted our input.

Present facility in Victorian ex psychiatric hospital. They wanted to know if we wanted to retain old building, with upgrade, or have new-build.

We eventually agreed that new-build would be best, but the old building should be retained (there's acres of land).

We`also said we wanted separate facilities for AD patients and younger mental health patients, to avoid possible problems.

UCI came back to us and said that had all been agreed. Sadly it's still on the drawing-board -- lack of funds. So what's new?

Skye

 

[Samantha]

Thanks for your replies on this. I've been caught up in all the work on the NICE decision. I think that is a supreme example of very poor user/carer involvement. They ask for evidence and experience from people with dementia and carers and then dismiss it all because its not published scientific evidence.
Thanks again
Samantha