Your experience with health and social care

[SophieD]

Hi everyone,

The integration policy team here at Alzheimer's Society would like to hear about your experiences of local health and social care, what you think works well and how you think the support offered to people with dementia, their family, friends and carers could be better.

Their aim is to deliver more person-centred and co-ordinated care, and to ensure their policy and influencing work in this area best reflects the expectations and wishes of people affected by dementia.

1. What kind of dementia support do you receive?
   
   This includes services people with dementia use as well as any services that support family and carers. This can include a whole range of things such as the GP, specialist doctors, support workers, dementia advisors, activity groups, day centres, care homes, occupational therapists, respite care, clubs and groups, district nurses and anything else you might access.
   
   
2. What do you think the services you use do well and what could they do better?
   
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Thank you

 

[SouWester]

My wife has just gone into a home, which we are currently fully funding. I hope to move to Wales soon where I shall try and get continuing care funding for her.

However it is what was involved before this that upset/infuriated me. We had had a midnight ride home in a police car. another time with the helicopter out at night searching the country roads without lights or pavements for her and yet another search when she gave her carer the slip. Unsurprisingly the Police did not want to continue this use of their resources and instructed me to change the front door lock so she could not get out.

I was willing to do this but happened to mention it to Social Security during a conversation about something else. The warned me that if I did they might prosecute me for denial of liberty.

I was completely taken aback. Did they really expect me to let her wander the country lanes in the dark putting her life and the lives of others at risk?
What about my duty of care towards her and others?
What about my marriage vows, to care for her in sickness and in health?
None applied evidently.

I mentioned it to the police who went ballistic, they said they had given me a perfectly legal order to change the lock.

My doctor said the decision was insane when I mentioned it to him.

It is irrelevant now as she deteriorated rapidly and had to go into care.

I was at a very fragile point in my life when this occurred and do not believe I should have been put under such stress by insensitivity/stupidity like this.

 

[Queen of all the fairies]

My husband was referred to the local hospital for dementia a couple of months ago and we are still waiting for an appointment. I did ring them after a couple of weeks and was told we would hear very soon. I've rung them again today but no reply. My husband is currently in hospital having had a urine infection, that is sorted b ut now there is an infection on the ward. It just goes on and on.

 

[Hickory dickory dock]

Hi everyone,

The integration policy team here at Alzheimer's Society would like to hear about your experiences of local health and social care, what you think works well and how you think the support offered to people with dementia, their family, friends and carers could be better.

Their aim is to deliver more person-centred and co-ordinated care, and to ensure their policy and influencing work in this area best reflects the expectations and wishes of people affected by dementia.

1. What kind of dementia support do you receive?
   
   This includes services people with dementia use as well as any services that support family and carers. This can include a whole range of things such as the GP, specialist doctors, support workers, dementia advisors, activity groups, day centres, care homes, occupational therapists, respite care, clubs and groups, district nurses and anything else you might access.
   
   
2. What do you think the services you use do well and what could they do better?
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Thank you

I had very little help from the health and social services in regard to dementia care for my mother . She’d had to leave her own home 1/2018 to stay with me as she developed AF and severe heart failure which revealed the dementia as she couldn’t manage even the most basic drug regime. I waited many months to see the dementia ‘ team’ -I didn’t see a team only the consultant. I expected ‘a team ‘ at the first appointment of social worker , others perhaps OT or physio . This to help with looking at future / current needs eg accommodation, her mobility which was poor due to balance problems etc. The GP referred her for mobility help, the team were good and came to the house. However my mother wasn’t motivated or lacked the insight into the need to do the exercises daily... I’m not sure the physio team appreciated the dementia aspect affecting their work. I asked for a walking aid but the physio team wanted her to complete the course of exercise first . I was however advised what aid I should look for so went and got one myself. She’s amazing with it now. She started using it all the time after going into a residential/ nursing home 8/2018. Social services/ housing were terrible. Never saw them. Spoke on tel. “ what do you want” I was aware all elderly who are having problems at home are entitled to an assessment , they didn’t seem to be! When they heard we would be self funding care I had to find her residential home myself with no input or lists from them. I made contact with a local charity that helps with activities for dementia patients/ carers but never took up the offer of the activities, my mother not keen as the area was a bit downmarket for my mother who is a bit of ‘a snob. ‘(Think Hyacinth Bucket or Marge in The Good Life) We nearly went to a coffee morning in the 6 months she was with me ...So in summary I don’t think health and social services are integrated in my area, certainly not at the “ early” stages which is when they could be helpful. I think they think they are! Now she is in a home she has had no further specialist FU from the Health care services but the home put on activities which is for dementia sufferers and they are very good. My mother is more mentally stimulated now that she was 12-18 months ago.

 

[Bronzestraw]

Hi everyone,

The integration policy team here at Alzheimer's Society would like to hear about your experiences of local health and social care, what you think works well and how you think the support offered to people with dementia, their family, friends and carers could be better.

Their aim is to deliver more person-centred and co-ordinated care, and to ensure their policy and influencing work in this area best reflects the expectations and wishes of people affected by dementia.

1. What kind of dementia support do you receive?
   
   This includes services people with dementia use as well as any services that support family and carers. This can include a whole range of things such as the GP, specialist doctors, support workers, dementia advisors, activity groups, day centres, care homes, occupational therapists, respite care, clubs and groups, district nurses and anything else you might access.
   
   
2. What do you think the services you use do well and what could they do better?
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Thank you

My wife was initially diagnosed in 2014 and was solely cared for by myself. She has been in self funded care since November 18 so we have been paying the 'dementia tax' because the NHS say as dementia is incurable it's no longer an illness, it's a condition, and therefore the NHS do not have to contribute (an appalling interpretation and abuse of the English language) That said, with all their constraints I can see where they are coming from and I know there are far more people with much more serious conditions. Sadly our money is running out already so we are now entering the minefield of dealing with the local authority. Trouble is no one tells you exactly what the position is until you've hit the brick wall. Carer's have to scrat around on a steep learning curve from whatever source they can as they go along.

When first diagnosed we were told, " Your wife has Alzheimer's, here's a prescription, come back in six months". It would have helped if we had been given some information as to what to expect. That didn't happen. It was very much a 'leave it with you' operation. Six monthly visits seemed to be nothing more than a social chat to justify the subsequent financial claim by the Specialist against the GP. Practice.

Four years later I attended an Alzheimer's course (highly recommended if you get the chance).
The first thing I was given was a book, 'Caring for the person with dementia'. It's free and available to anyone, including the professionals who are encouraged to distribute it to their patients. Had we have been given something like this at the outset by our Consultant or Doctor it would have saved us an enormous amount of worry and difficulty in finding things out. The Society are doing their best to promote it but at the end of the day it's down to the professionals to make sure the information gets through. In most cases it doesn't seem to.

I accept that the medical profession and Social Services are under severe financial constraints. Most sufferers are in the winter of their lives and are no longer seen as a priority. They do not contribute economically and are not cost effective in Government terms. It has reached the stage where Social Services in particular no longer provide a support service. They respond only when a crisis has broken to try and clear up the mess with a minimum of time and effort to cover their backs and avoid criticism.

In the early stages there seem to be many internal departments in both health and social services running around giving conflicting advice about how to spend your money on home care, but when it comes to the time when financial input may be needed, the suggestion if that the sufferer is no longer able to be looked after at home, self funded care is the best option. Cynics might suggest that in some cases this is a 'cop out'.

In past experience with my wife's parents (one had Alzheimer's the other vascular dementia) we found that a specific nominated Social worker was booked off to the case. That was the only point of contact that was needed. They knew the case, who and how to resolve any problems. This no longer happens. The case worker you meet you will never see again. There follows a procession of other case workers, all of whom no doubt carry a heavy load and are under pressure to cut corners and do the minimum at minimum cost.

Integrated care: For years our caring political parties have announced plans to face the challenge by integrating health and social care "A paper will be published as soon as practicable" but; a) it never is, because; b) all parties balk at the potential cost to the exchequer
and their political future. No politician is prepared to bite the bullet.

It is clear when trying to access the system there is much overlapping between social services and specialist units dealing with dementia. Lots of expensive back office administrators running around advising each other but not helping on the front line leading to lack of real, effective support. There is also an increasing tendency to rely on voluntary services to save costs. As President Regan once said. "The most frightening thing to the American people are Government officers saying the four words 'We're here to help you".

Political correctness further complicates what is an essentially a caring business. Patients and carers are not interested in such things, all they want is for the professionals to get on with it. If they can't, say so. At least we then know where we stand.

 

[wonderfulmum]

Spot on! I have experienced if not all of the mentioned. We are left to sort and deal with Dementia Patients ourselves. I have found No-one will take ownership, I have and still am finding I'm being passed around, then waiting for callbacks, leave messages, hear nothing so ring around all over again and still given number after number after number to try sort through help, it's a minefield. I really do believe there are many many many Dementia help groups being paid by the council who seem to take my details and mums, only to log they have 'seen to me' only to end saying I'll pass message on or try so-and-so, which I do only to go thru same process again and never to hear from again... That's were the Dementia costs are going, payment to groups, who I find are not taking ownership of my cry for help and doing nothing much of anything but advertise as part of council help groups. My mum is of an older generation so yes I believe these people don't see it's worth the time, so sad but I have burnouts with the strain of living with dementia and trying to access help.
I worry so much and fear for those PWD living on their own, what hope do they have, what crisis they must go through, so so sad... What happened to care, empathy and ownership to take stain off Dementia patient and carers. I'm sure I'm not the only one that feels this way but It can break you many times but we have no option but to continue with no end in sight and no change coming soon, I plod on

 

[lolly65]

My mum and i only got help when she was admitted to hospital amd was then in the system, she was diagnosed last october which took me 8 months to get to this point with no help from anyone, but because she was taking up a bed in the hospital she was transferred to a 6 weeks temporary placement care home, then and only then was I contacted by the social services and a as case worker was dealing with my mum's case, having met with her at the home we went through the options and it was left up to me to find a better home for my mum, as I don't drive I wanted her nearer me as she was over 20 miles away in the temp care home, I visited all the care home around my city, and found one I liked and would be ideal for her, I had to organise everything myself, contacted the as the finance team at, I am paying myself the top up fees, I have her house up for sale, as she will be a self funder when her house is sold, I am in the process of getting my cop order for mum, which will cost me a lot of money, having had various meetings with the as and finance people all there interested in is money and who is paying what, I am so disgusted that my lovely hard-working mum's money will all be took in care home fees, if she did understand she would be devastated that she can't leave her kids any money when she goes, it has been an extremely stressful experience to say the least, I have had no support from anyone, it's only now that the severity of this is now sinking in as i watch my mum fade away before my eyes, imvisit her every week and buy her things that she needs, its all so overwhelming, i personally have not been offered any help emotionally on any levels, of how to deal with this, I was given a leaflet in hospital and that was it, I work full time and have good understanding managers as I have had to take a lot of time of to get things sorted, more help is needed for the persona with dementia and the family of what to expect how to cut through al the red tape, who to contact surely there must be a better way of dealing with this awful situation you find yourself in, it has been a rollercoaster of emotions, meetings, telephone calls etc, I have told my partner to shot me if I ever get this awful disease that robs you of you. No one deserves this, it has caused me an awful lot of stress and heartache, and tears, it was very dark days, i have found more out just by using the internet and what lies ahead, and how my lovely mum will deteriorate, not sure how I will cope with it all when the worst of it happens. No one prepares you for any of it, all of it is so complicated, they need to make it easy to understand all of it.

 

[twyford]

Hi everyone,

The integration policy team here at Alzheimer's Society would like to hear about your experiences of local health and social care, what you think works well and how you think the support offered to people with dementia, their family, friends and carers could be better.

Their aim is to deliver more person-centred and co-ordinated care, and to ensure their policy and influencing work in this area best reflects the expectations and wishes of people affected by dementia.

1. What kind of dementia support do you receive?
   
   This includes services people with dementia use as well as any services that support family and carers. This can include a whole range of things such as the GP, specialist doctors, support workers, dementia advisors, activity groups, day centres, care homes, occupational therapists, respite care, clubs and groups, district nurses and anything else you might access.
   
   
2. What do you think the services you use do well and what could they do better?
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Thank you

My father had dementia and he was violent and aggressive toward my mother. I had fairly good support from social services in that they would agree to increase his attendance at a daily club for dementia parents albeit we had to pay for that in full. No other options were suggested although I did explore a number of things through Alzheimers society

However when my mum who had also started to display signs of dementia was admitted to hospital and I had to arrange respite care for my dad they refused to let him stay at the care home where he’d been attending the day club and they placed him in another one much farther away that was much more basic and I’m assuming cheaper. My mother deteriorated rapidly and it was clear both she and my father needed 24 hr care. This is where I really felt I needed support and guidance I had no advice from the social worker assigned as to how this could be arranged or financed or what the process would be I had to do all the research myself. Which I did and I found them a home where they could be together and close to me only to be told at 11th hour you need our approval to go ahead and we’re concerned you’ve not explored other care options. My dad at this time was still in the home where he’d been placed for respite some 5m before. After chasing they eventually approved residential care for which we were paying in full through the sale of my parents house. The final straw for me was when the social worker said you can go back out partying now.
I was so stunned and was made to feel that I was only arranging residential care because my parents were an inconvenience to my social life. And I a thought you have no clue about any of this and have you actually listened and understood anything I have told you.

When we finally sold the house the council deducted £20k in care fees for my parents event though I’d paid the care home direct- they’d neglected to explain I didn’t need to pay the invoices I received and it took me 4 months to sort it out and get the money back.

The big gap in service I experienced was the lack of anyone who could take you through the range of care options available and help you think through the best course of action and who could then explain the whole process what would happen and when and the financial aspects. I consider myself fairly switched on and I found I was grappling in the dark , the best advice I got was through Age Uk website.

 

[DesperateofDevon]

So I have to say once I unravelled the different agencies & actually got Social worker, community nurse & care agency in Mums house at the same time it became obvious to all that the GP was the weak link & also not present.
Emails from the GP stating others had been asked to action things- that these people didn’t have any notification or knowledge of made it obvious to all present where the issues lay.
By agreeing to take ownership of communication between all the agencies involved in Mums care & taking the initiative to contact CMHT I got the help my Mum needed.
Shockingly my mum was diagnosed with dementia in 2014; & was allowed by her GP to take primary care lead of my Dad in 2016.
Without the GP’s support my Dad was isolated from having access to the help he required; abused by my poor confused Mum who had no ability to provide the care needs he required.

So the whole system depends on a lynch pin to co ordinate & inform.
Openness & clarity of what is available & what can be expected is required.

The Clinical Mental Health Team have been amazing with my request for help & diagnosis has been within two weeks.
Confirmation of what I already knew but also information about how I can access help etc plus 24 hour help when required.
Also the community nursing team have gone above & beyond; even when on holiday last week the lovely nurse / matron touched base with me twice to make sure everything was moving along & check on mums health. Along with the carers sourced by Mums social worker who has always promptly replied when able to ( she works part time) I have a network who want to ensure care & safeguarding of my Mum is in place & are working with us in Mums best interests.

Alzheimer’s society helpline gave me the courage & knowledge to be informed & their support has been invaluable.

As a long distance carer you have to build a body of evidence to reinforce the issues your PWD experiences.

The GP remains the weak link but the other agencies fill the gap & support me & being open & honest with them has resulted in honesty & openness in return.

County council funding - I ring & they explain patiently the process of financial assessments. Ridiculously my Mum was given paperwork in 2016, surprisingly I had to play catch up in early 2019 when none of it was done!

Easy for PWD to fall through the gaps

 

[lolly57]

My brother has vascular dementia diagnosed 12 yrs ago,he also has many other health issues,after he was diagnosed he was handed a pamphlet and that was it...no follow ups no further appointments,no consultants,nothing,we had a social worker inflicted on us who did a competency test on him but the written result from that read that he is never left alone for more than an hour (he is never left alone for a single second as he has choking fits) and that i let a neighbour use our parking space and sadly thats as good as its got after all this time,he was allocated a personal budget 4 yrs ago...we have yet to see or receive any of it,i found out 2 weeks ago that adult services had cancelled it back in december but how they can cancel something weve never had seems a bit silly we get no help or support at all Im pushing for respite as Im losing the sight in my left eye and need an operation but so far all Ive had is empty promises of ifs buts and maybe's,and made to feel that Im on my own with a very difficult situation as brother is becoming more and more disabled and the double incontinence is ruling our lives,even the Admiral nurse wrote to me and said we don't need her as Im managing well on my own,but she doesn't seem to understand that I have become completely housebound and have no family to help im almoat at the end of my tether in dealing with social services and adult care I could write a book about their incompetence.

 

[daddykins]

My wife was first diagnosed with Vascular Dementia some 6/7 years ago and I assumed the duty of carer.
Since then she has had a Heart Attack, about 5 years ago, which left her with AF and required a Pacemaker and just over 2 years ago needed a Colostomy, and still I managed all my wife's care without any outside help.
Unfortunately earlier this year I needed a Angiogram and it was only at this time did our new GP get involved and get onto both Social Services and Community Mental Health.
This led to another appointment with a Consultant who confirmed the original diagnosis as Mixed Dementia and recommended she attend a Day care Hospital two days a week. Downside to this is that it will be for only 8/9 months and then we will be on our own again, as trying for day-care locally is a nightmare.
However as a plus side, I have been awarded (?) four whole weeks respite care a year.
I could be really sarcastic and say 'Whoopy do', but why was I not able to have this before it was treated as a crisis?
Fortunately SS have a scheme with one care home not too far away, that you can book these weeks over the year and they remain yours, even using the same room for continuity.
So my feelings about care are that Social Services need to be really pushed to get anything done,
but I may be one of the lucky ones and I do have some help at last.

 

[Dimpsy]

It's been so interesting reading all your posts and the difficulties encountered along the way.

The area I live in has a totally different approach and OH and I can't sing the praises of the NHS, SS and Alzheimer's Society enough.
Ours is a long and distressing story, but to cut to the chase, mum moved in with us in 2017. She failed the simple memory test in the autumn and so our GP referred her to the county hospital.

The appointment was within three weeks of referral and was an all morning affair. Starting with an MRI scan, followed by more detailed memory tests during which time OH and I were in a separate office being asked about mum's background, general health and what we thought of her mental state.

We then sat in the waiting room for half an hour or so while the team garnered the scan and memory test and were able to form a diagnosis
We were called back in to see the consultant who gave his opinion that mum had Alzheimer's (for at least three years) and suggested Donepezil might help slow the progress of the disease. He took great pains to ensure we understood his opinion and gave us the opportunity to discuss any points we didn't
understand.

In our part of the country, we understand that this is now best practise which is very satisfying, all the tests are done on the same day, with a firm diagnosis and treatment at the end, and then follow on appointment's; we felt as if we had been scooped up and were well looked after.

Mum began her medication regime at the lower 5mg dosage. After a few weeks, we had a further appointment at a local hospital, with (I guess) a lady from the mental health team and a lady from Alzheimer's Society. The purpose was to find out if mum was tolerating the Donepezil (she was) and so to increase the dosage to 10mg. The AZ rep gave us lots of information, booklets, leaflets etc about dementia, the disease and organisations that we could turn to for help.

We were asked if we would be interested in attending a Memory Matters course, run over six weeks, and which also gave us the opportunity to meet other people in our community who were newly diagnosed as well. Our class formed quite a bond, and the support from the local AZ Society team was brilliant and ongoing - we were supplied with local phone numbers to ask for advice or to simply scream down the phone if we were having a frustrating day (in fact, not unlike TP!).

SS became involved as Mum needed safeguarding from other family members, the head of department dealt with mum and was fair in her judgement and extremely supportive of mum, listening to her and backing her 100%. There has been cause to contact SS on at least three occasions since and each time they have treated mum (and us) with integrity. Every specialist we have seen has confirmed that mum has full mental capacity to make her own decisions, although there are three of us who have LPA for both finance and welfare, again, the processing of the application's helped along by SS.

We are not at the CH stage so can't comment on that side of things.

Funnily enough, the one fly in the ointment is the main AZ Society national helpline. I phoned with a question and the person I spoke to wasn't the least bit helpful, the impression she gave was that it was all too much of a bother. I wouldn't phone again!

 

[GRIM57]

I have to say that we have had an awful experience of the failure of Social Services to 'do their jobs competently or professionally'! After three meetings a new social worker undertook a Mental Capacity Assessment on my wife without any regard to the MCA Code-of-Practice. As a consequence, my wife was terrorized and terrified for weeks in an entirely inappropriate Care Home. In order to intimidate me I was vilified, victimized and ignored! With the help of our Dementia Support Worker and an overriding love and affection for my wife, we have, almost, got her home. I have one bit of advice for family Carers; keep a diary! As for our law makers; make Codes-of-Practice and 'Guidelines' a legal duty for all those employing their powers! With real consequences for those who fail to do so.

 

[Exning]

Think you should explore the experiences of people in Scotland where there is in theory an integrated service. The reality of the way they operate however can leave a lot to be desired.
My experience shows that there is a profound lack of transparency and integration between the heath element and the community one.
Could be an isolated and unrepresentative example but my current complaint to the Scottish Ombudsman Service relates to significant misinformation, delays and non compliance with law, guidance and good practice.
The system in theory in Scotland for transferring people from Hospital and Residential homes is logical, clear and sensible. The reality is far different

 

[Rosserk]

I spent 12 months trying to get a doctor to assess my mother. She was driving her car every day but couldn’t tell you what day it was. I rung the GP several times but couldn’t get passed the receptionist. It was only when I called Dementia UK who told me to ring her Doctor and say

“I am reporting a vulnerable adult who I believe has dementia. She is driving her car and if she or someone else comes to any harm it will be your fault. I am passing this responsibility over to you in accordance with legislation. The GP rang with in the hour and visited my mother the following morning.”

I’ve never seen Social Services and I am not getting any help from anyone and I’ve never heard of integrated services? If they were all joined up maybe I’d have some help!

More needs to be done to help people in crises. I can’t get any help and I’m literally at breaking point and my health is very poor. Thank you Dementia UK you’re my only support!

 

[DesperateofDevon]

It's been so interesting reading all your posts and the difficulties encountered along the way.

The area I live in has a totally different approach and OH and I can't sing the praises of the NHS, SS and Alzheimer's Society enough.
Ours is a long and distressing story, but to cut to the chase, mum moved in with us in 2017. She failed the simple memory test in the autumn and so our GP referred her to the county hospital.

The appointment was within three weeks of referral and was an all morning affair. Starting with an MRI scan, followed by more detailed memory tests during which time OH and I were in a separate office being asked about mum's background, general health and what we thought of her mental state.

We then sat in the waiting room for half an hour or so while the team garnered the scan and memory test and were able to form a diagnosis
We were called back in to see the consultant who gave his opinion that mum had Alzheimer's (for at least three years) and suggested Donepezil might help slow the progress of the disease. He took great pains to ensure we understood his opinion and gave us the opportunity to discuss any points we didn't
understand.

In our part of the country, we understand that this is now best practise which is very satisfying, all the tests are done on the same day, with a firm diagnosis and treatment at the end, and then follow on appointment's; we felt as if we had been scooped up and were well looked after.

Mum began her medication regime at the lower 5mg dosage. After a few weeks, we had a further appointment at a local hospital, with (I guess) a lady from the mental health team and a lady from Alzheimer's Society. The purpose was to find out if mum was tolerating the Donepezil (she was) and so to increase the dosage to 10mg. The AZ rep gave us lots of information, booklets, leaflets etc about dementia, the disease and organisations that we could turn to for help.

We were asked if we would be interested in attending a Memory Matters course, run over six weeks, and which also gave us the opportunity to meet other people in our community who were newly diagnosed as well. Our class formed quite a bond, and the support from the local AZ Society team was brilliant and ongoing - we were supplied with local phone numbers to ask for advice or to simply scream down the phone if we were having a frustrating day (in fact, not unlike TP!).

SS became involved as Mum needed safeguarding from other family members, the head of department dealt with mum and was fair in her judgement and extremely supportive of mum, listening to her and backing her 100%. There has been cause to contact SS on at least three occasions since and each time they have treated mum (and us) with integrity. Every specialist we have seen has confirmed that mum has full mental capacity to make her own decisions, although there are three of us who have LPA for both finance and welfare, again, the processing of the application's helped along by SS.

We are not at the CH stage so can't comment on that side of things.

Funnily enough, the one fly in the ointment is the main AZ Society national helpline. I phoned with a question and the person I spoke to wasn't the least bit helpful, the impression she gave was that it was all too much of a bother. I wouldn't phone again!

Wow so that’s the way it should be!
I have to say that I have found all the on the Alzheimer’s helpline to be amazing & believe me I’ve rung many many times. Without the Alzheimer’s society advocacy I dread to think where we would all be.

 

[Dimpsy]

Wow so that’s the way it should be!
I have to say that I have found all the on the Alzheimer’s helpline to be amazing & believe me I’ve rung many many times. Without the Alzheimer’s society advocacy I dread to think where we would all be.

Hi @DesperateofDevon, we definitely felt that all the agencies were working together, particularly impressed with the way the local Alzheimer's Society seemed to be the so prominent and tied up all the loose ends.
Once the diagnosis had been made with the flurry of activity that followed - drugs regime, Memory Matters course, SS involvement, etc, things quietened down and we have settled into a pattern of life, not the retirement OH and I had looked forward to, but life has a way of throwing googlies and off you go along a different path!

I guess the next test will be if/when mums AZ progresses to the next stage.

Thank you for quoting your experience of the AZ Society helpline, perhaps I have judged to harshly, we all have off days, but definitely my first port of call would be the local branch.

 

[RosettaT]

I felt abandoned by the system. This is his diagnosis, here are his meds get on with it attitude and I we only got that aftef I rang because it took them 3mths to read the scan results. Only 12mths later when I realised I could register with my surgery as a carer did doors start to open, because they contacted other agencies. By the way once on the surgery radar they were brilliant.

Our other local hospital where my OH spent 6 out of 12 weeks because of UTIs, had no appropriate ward, they had very little understanding of his needs or cognative ability. Only 1of the 5 wards he was in took any notice of my thoughts or requests for his care. Often his breakfast was on his table out of reach at lunch time along with a cold mug of tea. I felt I had to be there at lunch and tea time to make sure he got something to eat and drink each day. One ward raised a chart to record his intake, then failed to fill it in.
I believe the hospital physios and OT wrote him off because of his diagnosis and work load rather than access his ability, thereby he didn't get any exercise and came home having to be hoisted. After basically being told there was a 4mth wait in the community and there were other, more easily addressed cases that would reduce their waiting list, I employed a private physio. OH is now walking with help, 9mths after they said he couldn't/wouldn't ever walk again.

I think the flow chart used by 111 is too black and white for a PWD. When other half has a UTI he is basically asleep all day long and I can't rouse him, so when I say he isn't unconscious yet they cant speak to him they think I'm being obstructive and I was told by one person who answered the phone either I could allow them to speak with him or I could hang up! It was only when I said I would dial 999 she sort advice and I managed to speak with a clinician who understood the problem.

 

[cumbria35]

Hi everyone,

The integration policy team here at Alzheimer's Society would like to hear about your experiences of local health and social care, what you think works well and how you think the support offered to people with dementia, their family, friends and carers could be better.

Their aim is to deliver more person-centred and co-ordinated care, and to ensure their policy and influencing work in this area best reflects the expectations and wishes of people affected by dementia.

1. What kind of dementia support do you receive?
   
   This includes services people with dementia use as well as any services that support family and carers. This can include a whole range of things such as the GP, specialist doctors, support workers, dementia advisors, activity groups, day centres, care homes, occupational therapists, respite care, clubs and groups, district nurses and anything else you might access.
   
   
2. What do you think the services you use do well and what could they do better?
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Thank you

My husband will soon be 87 yrs old and was diagnosed with vascular dementia in 1980, at first we saw the consultans regularly but now not even once a year, they have decided that a yearly visit by the memory nurse will suffice. I met my local MP to ask why we were unable to speak to an Occupational Therapist like many of our friends in other parts of the country. I was referred to our local Clinical Comissioning Group only to be referred back to Age Uk in spite of my complaint that the lady who called to see us was also the lady who sorts the financial matters out and asked us what we would like. I find our local Social Care Services very difficult to deal with. The NHS website states that they will pay for appliances under £1000 yet we were told that we would have to pay for everything (even for rubbers for the walking stick but the physiotherapists would come and check them!). We do attend a local singing group funded by various charities rather than the Alzheimers group as we find it more energetic and lively there. We are lucky that our local Care Co-ordination is very good but her hands are tied by the local council services agenda. Our local Carers Support Group are very helpful too. I dread to think what will happen when things get much worse as the Government don’t seem very inclined to do anything to improve the situation for Dementia Sufferers.

 

[DesperateofDevon]

I felt abandoned by the system. This is his diagnosis, here are his meds get on with it attitude and I we only got that aftef I rang because it took them 3mths to read the scan results. Only 12mths later when I realised I could register with my surgery as a carer did doors start to open, because they contacted other agencies. By the way once on the surgery radar they were brilliant.

Our other local hospital where my OH spent 6 out of 12 weeks because of UTIs, had no appropriate ward, they had very little understanding of his needs or cognative ability. Only 1of the 5 wards he was in took any notice of my thoughts or requests for his care. Often his breakfast was on his table out of reach at lunch time along with a cold mug of tea. I felt I had to be there at lunch and tea time to make sure he got something to eat and drink each day. One ward raised a chart to record his intake, then failed to fill it in.
I believe the hospital physios and OT wrote him off because of his diagnosis and work load rather than access his ability, thereby he didn't get any exercise and came home having to be hoisted. After basically being told there was a 4mth wait in the community and there were other, more easily addressed cases that would reduce their waiting list, I employed a private physio. OH is now walking with help, 9mths after they said he couldn't/wouldn't ever walk again.

I think the flow chart used by 111 is too black and white for a PWD. When other half has a UTI he is basically asleep all day long and I can't rouse him, so when I say he isn't unconscious yet they cant speak to him they think I'm being obstructive and I was told by one person who answered the phone either I could allow them to speak with him or I could hang up! It was only when I said I would dial 999 she sort advice and I managed to speak with a clinician who understood the problem.

Only bonus of 111 is that the conversation is recorded & notes sent to the relevant GP!