Gill and I have been working closely with the Scottish Dementia Working Group (SDWG) during our 8 week placement with Alzheimer Scotland. We have had the opportunity to listen and learn from their lived experiences as well as co-produce on this blog. The SDWG are a national, member led campaigning and awareness raising group, for people with a diagnosis of dementia in Scotland. The group are passionate about promoting change and raising awareness about current health care practices that don’t focus on the needs of the person living with dementia. During the pandemic it has been brought to light that post diagnostic support has been affected and the disparity in support needs to be addressed. The blog will be in two parts, the first look at the members positive and negative experiences of PDS and the second, (we will share next week on the 19th August) focusing on their learning how they believe post diagnostic support can be improved.
In 2013, the Scottish Government made a commitment that every person diagnosed with dementia in Scotland would receive one year of post diagnostic support (PDS) from a trained and named link worker. Unfortunately, we have learnt that the commitment is currently not being achieved in full. A person’s dementia journey does not start when they are diagnosed, as they may have been living with the condition for many months or years prior. The SDWG members have shared their feelings from when they received their diagnosis which were described as devasting, shattering and traumatic. This moment is crucial for the person to learn about their condition and gain the right insight and knowledge to help them move forward positively and know that they can have a future. This is where post diagnostic support steps in, to offer strategies, resources, and connections to help the person live well with dementia and plan for their future. Some of the members within the group have not received post diagnostic support due to receiving their diagnosis pre 2013 but have shared what would have made the start of their dementia journey a more positive one.
We would like to share with you what the members have said about their post diagnostic support experiences in their own words, starting with the positives experiences;
“My link worker got me out of a crisis that I went into after my diagnosis. She was absolutely brilliant, and she wouldn’t take no for an answer but she did it in such a way I couldn’t refuse. The people that have supported me have now become friends and that’s how we keep in touch”.
“Post diagnostic support is now available because there were so many people waiting for support and so many people pushing for it”.
“Getting your diagnosis is shattering, so it’s important to get that help and support at the start to find out you can still do a lot of things, I got excellent support within one place.”
“I was fortune that the follow up from the PDS team was excellent, as well as a supportive GP. If you have your GP in your corner, it’s a massive benefit. It was very helpful and joined up”.
“I got good support as well, from my GP and referred onto neuro team, although it was spaced out it was connected, and I knew I was getting answers. I felt like I was getting looked after”.
“I valued the support and connection she had created for me.”
And the negative experiences;
“You become reliant on the support, and I was suddenly told you’re being discharged with no planning or warning. I suddenly found myself being discharged from their service and it came as a shock”
“You wouldn’t be told that the worker would be phoning and then they would phone while you’re in the middle of something and want a conversation. I didn’t know the person on the other end of the phone and didn’t feel comfortable talking to them”
“I had to be persistent to try to get the support, it was slow in coming and then quite erratic in the way it worked out”.
“The feet were taken away from us really and that would have been useful to have had that type of help at that time and not waited months. We have limped along without having an overview of what is being offered and it does make life even more difficult than it should or is. The person didn’t turn up to the appointment, she was off sick and no one phoned to let us know the interview was cancelled, so it wasn’t a good experience really all in all”.
“It is quite poor I’m afraid, so you get your diagnosis and then just home again and what do you do with all of that information that you suddenly have and wonder about your life chances and everything. The lack of continuity, always repeating yourself to new staff.”
“I think you are made to feel grateful when you do get the service but I think you shouldn’t be made to feel grateful for a service that you are entitled to”.
“All of the support stopped at the same time with little warning. It was abit of a wrench and left a big gap in someone to talk to and someone to ask questions to, it was abit of a blow.”
“It’s always around their diary and not around when is suitable for us”.
“Post diagnostic support classes people with dementia all the same, but we are all different. To give everyone the same support is very difficult. They are putting everyone in the same boat but we are not”.
However, it was evident that post diagnostic support has offered the members something that has been invaluable, and that was being introduced to the SDWG. One of the 5 pillars of post diagnostic support is “peer support from other people with dementia and their families and carers’. We have witnessed the incredible positive impact that the group has had on each other through the way the members interact and call each other friends. The group offers a supportive, comfortable, and understanding space where they can share their feelings and experiences that other people can’t potentially understand. Although the group’s main aim is to raise awareness and campaign for better care for those living with dementia, it seems to have offer a lot more with new opportunities and has enriched their lives for the better.
“I got more support out of this group in the past year than I did out of post diagnostic support”.
Please look out for the next blog on Thursday 19th August, which will talk about what the members have learned and how they would like to see post diagnostic support improved moving forward.
Gill and I would like to say a massive thank you to Wendy Rankin and the members of the SDWG for allowing us to be part of your group during our placement with Alzheimer Scotland. You have been so welcoming, supportive and compassionate towards us and we will be forever grateful to have been a part of your mission to improve dementia care for people in the future.
Claire and Gill
If you would like to learn more about the Scottish Dementia Working Group you can follow the group on twitter here and also look the SWDG website page here.
Title: Post diagnostic support
Sourced From: letstalkaboutdementia.wordpress.com/2021/08/12/post-diagnostic-support/
Published Date: Thu, 12 Aug 2021 06:00:00 +0000