Scotland - psychiatric care: good, bad or indifferent?

[Haylett]

Some of you on TP will know that I looked after Mum in her own home for 17 years until she died in 2013. Mum had VD and although all language had gone, she still knew us and was surrounded by all of us who loved her and kept her connected, right to the end. We're still caring for my MIL who lives with us and who is now in the end stages of Alzheimer's.

I haven't posted on here for a while. I just needed some 'time out', even though the caring has continued day by day, week by week. I'm now working part-time supporting other carers who try to navigate the tortuous routes of accessing care and funding. Sometimes I'm asked to speak to student nurses about what it's like to care for someone living with dementia - the ups and the downs - and the frustrations of trying to liaise between services where people so often want to provide support but where protocols and processes often get in the way, leaving support so very short of what's really needed.

In two decades of caring, I've heard so much about person-centred care; about the rights of carers and those whom we care for, to have a voice, to live well - yet it seems harder than ever. There is the political will - and then there is the cold reality of what daily life is really like.

I have the chance, only for Scotland, I'm afraid, to feed back into the Scottish psychiatric service (from psychiatrists to CPNs and the CMHTs) in the hope that common-sense and compassion will prevail instead of targets and jobsworths. We need that magic vaccine. But until that day, care is all that we have.

So I would like to invite any of my fellow carers, or those who are living with dementia, to post or PM me. Tell me how the service has helped you, how it could be better, how it has let you down and cast you adrift. Mum's psychiatrist appeared once, never to be seen again. His attitude was poor, he didn't read Mum's background notes and when he left, she fell into a deep depression that lasted a year. By contrast, the CPN was wonderful - full of practical advice and contacts but she retired and was never replaced.

Today, I see carers battling on without the link workers that they have been promised; after three months, you fall off the contact list and it's back to the GP for a referral all over again. Maybe psychiatrists have only a limited role to play:maybe it's the CPNs that we need.

If you choose to post or contact me, I will take your stories forward (please no real names) and I promise I will try my utmost to get your evidence heard.

 

[Kevinl]

Depends if you mean; good, bad or indifferent in it's own right or when compared to the rest of the UK or Europe. Whatever it is, in its own right it seems to be a whole lot better than England or Wales so I'd have to give it a good (from the sound of it) is it good enough probably not but then many aspects of healthcare could stand some improvement.
Don't let the excuse "you're better off than most" put you off trying to make it even better in Scotland but I've yet to see a link worker, CPN, CMHT they don't exist in my world, a waste of time 6 monthly check at the memory clinic is as much as my wife or mother ever had beyond that nothing, not a sausage just a lot of talk.
K

 

[Haylett]

Kevinl, thank you for replying, and I'm sorry to hear that you have not been able to secure any real support for your wife or your mother. Dementia is hard enough as it is - I know that I have been extremely lucky to have had a great GP, wonderful DN team and a great Self Directed Support Co-ordinator who partially funded paid carers who gave unstinting care to Mum and support to me. Yet every day, working in a different region, I see carers who are completely disenfranchised, struggling to put in 24/7 care, 365 days of the year who are given a budget that would barely buy a box of groceries.

Recently I attended the Carers Parliament here in Scotland - but what I heard seems completely detached from the reality that I see every day. Here in Scotland, we're told that carers save the economy between £ 10-12 Bn a year - even if a quarter of that was ploughed into funding carers and care, we would be doing so much better. 3 out of 5 of us will be or have been carers at some point in our lives...

I hope that things will become better for you. Do you get any help or a break at all?

 

[Izzy]

Hi Haylett

My experience of the psychiatric service here isn't wonderful. Bill was diagnosed in 2001 and at that time he saw a consultant psychologist. That was the only time we saw the consultant. Bill saw a CPN then for a number of weeks as he was seen to be depressed after diagnosis. We didn't see a CPN again aftervthatboeriodn

After that we attended the memory clinic every 6 months. The doctor there was a psychologist and she prescribed the meds. To be perfectly honest I found her to be neither use nor ornament. She went through the motions of the tests and my questionnaire. The meds were prescribed and we were out in 20 minutes maximum.

There was no post diagnostic support when Bill was diagnosed. I know that people who are diagnosed in Scotland now are entitled to a year of post diagnostic support but I also know there is a waiting list for that.

As you know I am in the very fortunate position to have carers through the direct payment system. They have been my saving grace firstly with my mum and now Bill. The GPs are wonderful in relation to Bill's physical health but now he is no longer on medications for dementia there is no one who discusses the progress of the disease with me. It's trial and error and a wing and a prayer as far as Bill's mental health is concerned. He presents no behaviour problems so he isn't a priority for a mental health input. I understand that but it would still be good to discuss his dementia with a professional. I'm just so lucky that Bill is a mild mannered soul who lets me plod along with him as best I can.

 

[Haylett]

Thanks for your input Izzy. I think your experience with your Mum and with Bill pretty much mirrors mine with Mum and my MIL. We have been left more or less to "get on with it" - but have been fortunate enough to have the support of a wonderful GP (who does NOT charge for every little thing); an excellent community nursing team; and very good OTs when we have needed them (although the process of assessing need, writing recommendations then getting signed off is way too cumbersome if grab rails are needed by tomorrow to prevent a fall).

And, like you, we benefitted from Direct Payments/Self Directed Support. SDS is/was run by a superb co-ordinator who had the courage to underwrite packages that were less than residential care but sufficient to be able to recruit good people to work alongside us. We weren't totally funded but got 65% of costs met.

You mention lack of access to professionals in mental health to review disease progression etc. I totally agree. I found the CPN's input invaluable. She would call in at home, every three months unannounced, just to see how Mum was, and to ask if I had any issues that worried me. She stayed about 20 mins - it was informal and resolved a lot of small issues immediately because she was linked in to the NHS and SS networks that we needed. That is now totally defunct. We haven't seen anyone from the mental health services for years.

Talking Point is where I have often turned to for help and ideas; and it's the place to which I now direct others in my role as a support worker for carers. This is where so many of the best ideas are. TPers are incredibly well informed AND resourceful! Because only carers who have been there, done it - truly understand.

The region where I'm based, and where I try to help others navigate this process, is lagging far behind in the development of Direct Support. Agencies are struggling to field paid carers and every day, I hear about paid care which is abysmal. I work often in partnership with community nursing teams referring people to DWP to get Attendance Allowance and council tax rebates (for which we do NOT charge!), all the essentials that make up a sort of "starter kit" to try to save money or put more money into the budget so that carers aren't so desperately strapped for cash.

But the funding whether from government or this particular LA simply isn't there. I think there is still too much duplication of report-writing between SS and NHS - too many meetings about meetings; too much overlay of bureaucracy; too many highly paid executives who prevaricate. Carers Bill tells us (in Scotland) the rights that we (as carers) have - but the economy simply cannot deliver.

You might as well whistle in the wind.

 

[Izzy]

A while back I persuaded the GP to send the CPN out to see if she could help me with Bill refusing to get out of the car. She breezed along and was of no help whatsoever. The Carer and I talked more than she did. Off she trotted and we've never heard from her again. I emailed the Admiral Nurses to ask if they could advise. Even though they don't cover Scotland I got a long email in reply and the offer to talk to me by phone. I was very impressed. I wish we had them in Scotland. At the end of the day I have developed my own strategies for persuading Bill to get out of the car etc. Of course these were developed and informed by input from members of TP.

 

[marionq]

Ive been luckier than Izzy perhaps because John was diagnosed only three years ago. John has a consultant psychiatrist who he sees every six months but she always says that if I need her before that just to phone. This was not idle talk as on one occasion I did send in a letter and expected she would wait until our next appointment to discuss it but she phoned me at home.

During the first year when John was not on drugs he had a Link worker once a month to talk over issues, fill forms, give advice etc. This was very helpful and appropriate for that early stage. By the second and third year John's behaviour was more problematic, getting up to go to work several times a night, wandering and getting lost, and at this stage he moved on to medications and was given a CPN. The first one was good but not great but the current one has been a tower of strength who gets involved with other agencies to try and improve matters in general. This is part of the "eight pillars" initiative to join up communication between agencies.

This exchanging of info needs a bit of improvement I understand but at my end the work of the CPN is noticeable while the work of the social worker is mostly invisible. There may well be good reasons for that.

Overall I feel we have good support. It cannot be perfect because the task is so much greater than the resources available .

 

[Haylett]

Ive been luckier than Izzy perhaps because John was diagnosed only three years ago. John has a consultant psychiatrist who he sees every six months but she always says that if I need her before that just to phone. This was not idle talk as on one occasion I did send in a letter and expected she would wait until our next appointment to discuss it but she phoned me at home.

During the first year when John was not on drugs he had a Link worker once a month to talk over issues, fill forms, give advice etc. This was very helpful and appropriate for that early stage. By the second and third year John's behaviour was more problematic, getting up to go to work several times a night, wandering and getting lost, and at this stage he moved on to medications and was given a CPN. The first one was good but not great but the current one has been a tower of strength who gets involved with other agencies to try and improve matters in general. This is part of the "eight pillars" initiative to join up communication between agencies.

This exchanging of info needs a bit of improvement I understand but at my end the work of the CPN is noticeable while the work of the social worker is mostly invisible. There may well be good reasons for that.

Overall I feel we have good support. It cannot be perfect because the task is so much greater than the resources available .

Marionq - thank you for taking the time to post. I'm glad that your experience has been mostly positive, and interesting, that by contrast, Izzy's CPN was unforthcoming and unhelpful.

It just shows how experiences vary enormously from region to region; generally speaking, it does seem that we fare a little better in Scotland than in England and N. Ireland, though not sure about Wales. So much depends on the lead from the top. And right now, the weak link in the chain is mostly the SS for lack of resources, fear of taking a decision or both.