Yesterday I spoke about Healthwatch-York, agreeing to fund our group, Minds and Voices, if we worked with them to improve the services for people with dementia in York. Well last Monday was our first meeting.
The meeting was specifically for people with dementia to attend (marvellous!) 14 of us attended the meeting to discuss services in York – magic!
Sian Bolsom who works for Healthwatch felt that loads of issues weren’t picked up so they decided to listen to our experiences so people who deliver services would then in turn hear our voice. They’re here to listen to us.- yeh!
The aim is to change things for the better for everyone. Approximately 2700 have dementia in York – ½ have diagnosis. Nationally it’s estimated that 1/3 of people with dementia live with a carer – 1/3 live on their own – 1/3 live in a care home.
This initial meeting was to start to think about what topics we should concentrate on:
it’s not until we meet in groups like this that people realise there’s things out there they don’t know about. So here were the topics we decided on as a starter for 10.
Pre diagnosis – changing the publics concept.
You can’t access services if you don’t have diagnosis – I said that a diagnosis gives you a reason for the symptoms.
Some people don’t want to know – but that’s often because they have the wrong concept of dementia – fear. We have to respect those that don’t want a diagnosis but I wonder how many of those fear a diagnosis because of their misconception about dementia.
The focus is often on the end of our journey and we have an awful lot of time to fill from diagnosis through until the end stages!
Support post diagnosis was the next subject to get raised. What became apparent was the lack of consistency even across York. Someone had only had 1 visit in 3 years, others were more than happy with the services. It did become apparent that if you have another physical issue, that you are more likely to get a better service.
Relationships change – no-one gives us a manual – that’s why we need support and help to show us and our families how to live well with dementia. When there’s a lack of knowledge or understanding, this leads to friction and a break down in relationships – the very time when you’re at your most vulnerable and actually need the support of loved ones. Families can actually be the ones to ‘disable’ you by doing things for you before you’ve lost the ability to do things for yourself. This speeds up the decline because depression then sets in too.
Professionals and family alike need to focus on what we can still do rather than on what we can’t do.
Benefits –. No one tells you what you’re entitled to claim. The forms are a minefield to complete. Support is needed around sorting Finance and legal affairs.
Education – clinicians need to have more education.
We wouldn’t employ unskilled people in dementia – so why do we employ clinicians with so little knowledge about dementia inbuilt into their training. Include us in educating healthcare workers of all levels. This mustn’t be a token gesture though – they must listen and learn from our experiences.
Information and support throughout the progression – No one tells us what to expect. If we knew what symptoms we could experience we’d be in a better place to cope with them. We’d know they were normal. We could be told of strategies to help cope with them better. I’ve gave the example of ‘seeing things that aren’t there’ – I cope by saying ‘it’s the dementia and if it’s there in 1/2hr I’ll take notice of it, if it isn’t I’ll know it’s the dementia. This makes it less frightening – and it is frightening but especially if you’re not aware it could happen.
Transport and shops – some have a long way to go to become dementia friendly. However, all that needs to happen is better customer service as this would lead to a better experience for all in the community. We decided we could help organisations understand the issues we have and what they can do to make shopping and travelling a better experience.
Hospital – clinicians have on line training at York – so little is known of the issues we have in the hospital. So much work to be done with healthcare professionals.
Damian told us about what happens to people when they’re diagnosed In Stockport – people are invited to go on a course and from there you graduate onto ‘Educate’ ( a DEEP group like Minds & Voices) They have structured support :
everyone needs a pathway.
Finally there’s a need for discussion amongst just patients with dementia, discussion with just carers and then a combination of the 2. Each group has different needs but each needs to hear the voice of the other to gain maximum benefit.
Well there’s ‘a few topics’ to be going on with – I can’t believe I forgot to mention ‘research’!!!! – anyway,
let’s start talking because the sooner we talk the sooner we can change things.