Your experience with health and social care

[TNJJ]

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 dad has had a fairly good response from Social Services and a lot of other people.
I have always been the coordinator of all dads information.
I liaise with the GP when i notice new symptoms.I have permission to speak to them as it is on the computer screen.Dad has given verbal consent.I also liase with his pharmacy for his prescriptions.

I have found that if I didn’t co ordinate with the doctors ,pharmacy,hospital and care group.Nobody would know what is going on.
I book daycare and a bath once a month at a home as dad will not go anymore .
The befriender service has been offered but declined.
There needs to be a central body to co ordinate everything.

 

[Dadscarer]

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

 

[SingsWithPugs]

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.

Hi Cumbria,
This question is unrelated to the topic of this thread (I hope this is alright).
You say your husband is 87 and was diagnosed with vascular dementia in 1980. I'm wondering if you meant to say he was diagnosed at age 80.

But assuming he was diagnosed at age 48 (39 years ago) I'm wondering how the disease progressed, and how he was diagnosed. Did they even have MRI scans in 1980?

I'm hoping he really was diagnosed in 1980, since this would suggest that vascular dementia can progress very slowly.

 

[Bridgirl53]

My experience was that needing open heart surgery myself and being referred to our local social services by a carers group . No help was offered as the only thing the person I spoke to was interested in was whether my husband had fallen recently. I am going into hospital again within the next few weeks my daughter who lives 50 miles away is having to take unpaid leave to come and care for my husband, so i don't need to worry how he is coping.

 

[SophieD]

Thank you so much to everyone who has already posted about their experiences with health and social care, both positive and negative, on this thread.

If you'd like to share your experiences with local health and social care, here are some questions from our integration team that might help:

1. What kind of dementia support do you receive?
   
   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?

 

[Marionf]

Are other people experiencing the lack of practical help. My husband has been showing signs of dementia for the past eighteen months and his behaviour is getting progressively worse. He is finding life difficult to cope with so tends to shut himself away in a small TV room and rarely interacts with family. He also is having to cope with bladder cancer which is proving to be extremely difficult. My daughter is helping me try to cope day to day, but we lack practical help from outside. Who do we turn to in these circumstances.

 

[barryg]

What worked well for me was when I removed my mother from the nursing home which I had placed her in for a trial period, and to resume caring for her at home. Social Services threatened to call the police to prevent me. They were told the police had no authority to intervene.

We then had a period of 3 months during which we were given support. An occupational therapist was called in to assess my mum's safety, and made recommendations which we adopted. My my mum got extra time at the Day Centre (2 days per week instead of 1). A junior social worker went through a carer assessment with me in great detail.

But at the end of 3 months that all changed over an incident in which it was suspected that I might be abusing my mother. An Adult Protection Case Conference was convened which neither of us were invited to. At the conference the health and care professionals decided to apply for a removal order and later a guardianship order. When both of those failed for lack of evidence they found out how to use the Mental Health Act, which only required a medical opinion without any evidence of abuse. From then on it was plain sailing for them. And an impossible task for me in trying to challenge them. The courts and tribunals worship medical opinions. If you cannot get one which supports your position, you have nothing.

Health and Social Care are at their best when they are trying to support you and are willing to make shared decisions. But they are at their worst when they decide to oppose you. Then they ignore all the evidence to the contrary, refuse assessments which demolish their concerns.

 

[barryg]

... Integration can be very helpful when local services are supporting you, delivering joined up care. But when they are in conflict with you it works against you. Instead of medical professionals and social workers being independent, checking each others' concerns, and acting independently, one can now pick up the 'phone to get the other to say whatever they want to be said, without it being challenged. They are now colleagues, and you don't question the decisions of a colleague.

 

[Splashing About]

1. What kind of dementia support do you receive? Currently nursing home for end of life care. Prior to this: privately arrangement carers and not a lot else.
2. What do you think the services you use do well and what could they do better? The nursing home is amazing. The rest of it...hopeless. Not joined up at all. People would contact us (only after a crisis) and never introduce them self properly. I need it written down..a quick mumble over the phone and they’re gone ...with you unable to work out who, why or what. None of them ever spent enough time to try and assess the whole situation and work out what could have an impact. They spent a lot of energy finding reasons why you weren’t eligible. Can’t go to that service because she’s incontinent. Can’t have incontinence products because we’ve no evidence of that. Can’t have meals on wheels because she can’t open the door (or find it even!), can’t have any care because she’s not severe enough. And so it went on. They were all known as the ‘how can I not help you’ team
   
   
3. Have you heard of ‘integration’ in health and social care and what do you think it might mean? I think it means hospitals, GPs, voluntary and social care all working together. In reality it means the first two and last one putting a lot of energy into trying to force volunteers to cover all need

 

[Cobber]

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

1. GP, practice nurse, caring company, social services, singing for brain, this forum.
2.GP will do home visit if insist. PN sympathetic, caring with patient. Company, some very caring, kind, efficient, others ......SFor B great calm, supportive, friendly. Forum, release valve.
Badly. GP No regular appt, I have to go every 6 months for review of medication, mum ??? PN no regular appt, same, feel no real time, plenty of sympathy but no real! Support. Social services, there if you are really desperate otherwise don't bother to busy. Singing, not enough, especially rural areas, same clubs groups and nothing for mid to late sufferers.
Yes, health and social care working together? Seen in paperwork never experienced any in reality.

 

[DesperateofDevon]

1. GP, practice nurse, caring company, social services, singing for brain, this forum.
2.GP will do home visit if insist. PN sympathetic, caring with patient. Company, some very caring, kind, efficient, others ......SFor B great calm, supportive, friendly. Forum, release valve.
Badly. GP No regular appt, I have to go every 6 months for review of medication, mum ??? PN no regular appt, same, feel no real time, plenty of sympathy but no real! Support. Social services, there if you are really desperate otherwise don't bother to busy. Singing, not enough, especially rural areas, same clubs groups and nothing for mid to late sufferers.
Yes, health and social care working together? Seen in paperwork never experienced any in reality.

Totally agree
Social services notable by absence & contact-ability
GP - ...... well words fail me !

District Nurse team - amazing
CMHT - good

 

[nitram]

Have you heard of ‘integration’ in health and social care and what do you think it might mean?

Yes I have
It's part of the now nearly 5 year old DevoManc - Greater Manchester Devolution
https://www.england.nhs.uk/integratedcare/integrated-care-systems/greater-manchester-ics/
The LH side bar has links to other geographic areas.

There have been 5 years of total reorganisation, eg my LAs CEO has left, the position is now 'CEO for xxxx LA & Accounting Officer for xxxx CCG', a completely new departmental structure has been drawn up.

I think that as staff get used to the shock of the new structure and in several cases change of work location things are showing signs of improvement. Different towns are trialling different
innovations eg., one is trialling staff in care homes being able to Skype dedicated nursing staff in hospitals

 

[Ruth1974]

We have a really good OT who has been coming for years and we tend to get bombarded with rendom professionals from time to time such as
The CPN
The dietician
The physio assistant who pops in and takes him for a walk.
The life story book lady.

Well meaning but a bit pointless (and expensive).

This year i got a carers assessment, heard nothing at all back.

My husband was assessed for care. The social work assessment was appalling, misspelt names, names change at different points in the assessment, information is inaccurate and misleading, some of it is completely fabricated. I asked for it to be corrected or withdrawn and she refused. It is now the subject of a formal complaint and i have withdrawn permission for Social work to participate in discussions about my husband's care.

 

[Batsue]

Mum's consultant referred us to social services in February this year, so far they have visited twice and the assessor recommended respite in a nursing home, so far they have not been able to find anywhere within a 50 mile radius.