The learning continues apace as we came to week 5. We looked at what’s available or what SHOULD be available following a diagnosis in York! The big message today was that services should fit your need rather than you fitting into them. So it was to challenge both our learners and also the guest ‘stallholders’ of our ‘Market Place’
This week we met:
A representative from Older Citizen Advocacy York (OCAY) – they provide FREE advocacy including support with filling in forms and support with any area of difficulty.
One of our Local Area coordinator’s (LAC) for the council. Her job is connecting people with what’s on locally – and we found out there’s a whole load of stuff.
The regional coordinator from the excellent Join Dementia Research. He knows about a whole range of research projects going on across the region and can match our learners with projects of interest. This was great as research and the benefits of research has been a running theme in this programme so our visitor was pushing on an open door for volunteers to sign up!
‘It’s not all about laboratories and white coats – and certainly not about people poking about in your brain’, as B rightly said!
It’s good to know that ‘A Good Life’ is bucking the trend through fuelling an enthusiasm for research participation. Our visitor said that ‘usually staff don’t want to approach people about research‘. This is sadly consistent with the active resistance we encountered locally for referrals to this programme 🙁🙁 .
As H said, ‘Joining in research gives me something to focus on and a chance to leave a legacy for those people yet to be diagnosed’.
The head of dementia services at City of York Council (CYC). She told us about Independent Living Centres if you need extra care in the future and also about any social services for older people in York.
A worker from Dementia Forward – a local dementia charity who can signpost you to other services and provide visits to chat.
A representative from York Healthwatch. Healthwatch provide a public voice to raise any concerns about health services you might have. Healthwatch have also produced a ‘Dementia Directory’, which was handed out on the day. (An excellent resource which came out of a year long consultation with York Minds and Voices!)
As well as finding out what was available we discovered also what was NOT so easily available! From session 1 our learners had requested information on benefits and a possible reduction in Council tax. NONE of our guests came armed with information on that. Including those from the Council! I did though!
It’s shocking none of our learners over 65 had yet been informed of these entitlements, despite being diagnosed for some time. And worrying that only OCAY seem to provide practical help with form filling. In the market place we all went straight to make appointments with the lady from OCAY!
It seems that there was a distinct lack of awareness amongst our guests of the main benefits available when working and supporting people with dementia – most could offer signposting (TO WHOM!??) betraying a real lack of confidence in this area or a deliberate policy NOT to undertake such work. Incredible really given it was always a good ‘foot in the door’ being able to help people access benefits or get a few quid off the council tax. Lessons to learn for local providers.
The large and confusing amount of links and numbers was coming too thick and too fast for the notes that Stewart our tutor was trying to make and he rightly pointed out, ‘All this needs to be put in one place’.
From the discussions at this session we will be putting together a short list of useful numbers and first steps that can help future learners and that can also show providers what information THEY should be giving – and HOW they should share it – Learning AND resources!
In Summary we found out some good information and some gaps in what matches the agenda and needs of people living with dementia. As Paul said ‘if we can’t access certain information because we have a dementia, then that’s discrimination‘. It certainly is and Rights is the topic for next week’s session – We shall keep you posted!