What is your experience of working in partnership with health and social care? Do you feel that you have been treated as an equal partner, respected for the experience that you have in caring for someone? If so, has this been true when you have disagreed with what the professionals have recommended?
Are you an Equal Partner in Care?
- Thread starter barryg
- Start date
@barryg - in my experience, with a few exceptions, there isn't much working in partnership, especially with social care services. When my mother was in a care home, they included me in best interests meetings as her representative. However, when my father was discharged from hospital, the care plan was inadequate and social care could not offer anything except possibly a care home placement but only if we left the existing arrangement to fail. I understand they cannot afford to support everyone in a way that suits an individual, but there was very little advice.
When I have queried things - in hospital I got the impression they were often too busy to listen. Occasionally I think it is taken on board that I am a carer and know my family, but because I am also disabled, services don't know how to deal with me
When I have queried things - in hospital I got the impression they were often too busy to listen. Occasionally I think it is taken on board that I am a carer and know my family, but because I am also disabled, services don't know how to deal with me
My experience is that self-funders are left to get on with it . My husband organised care for his mother both at home and in a care home with no input whatsoever from social services.
Thank you. Was your husband accepted as an equal partner by those who provided care for his mother?
Did your father's care plan acknowledge the care which you provided, and treat you as an equal partner? I found that if two carers were assessed as necessary for a task then I was not counted as one of them! The reason given was insurance, and that I had not been trained. However when I asked for training and/or assessment of my ability then social services claimed they were legally unable to offer either!
Self-funders are pretty much left to get on with it themselves. However , the LA must give them access to information about care...but this is more likely to be direction to a website listing care providers.
I am asking because I am intending to submit a Petition to the Scottish Parliament by the end of May 2014, asking for carers (and those who provide self-care) to be recognised in law as equal partners in care and experts by experience. I have come across several cases (including that of myself and my mother) in which the opinions of medical and social work professionals have been given undue weight in courts and tribunals. (Undue in the sense that bare opinions with no assessment or experience behind them have outweighed the practical experience of family carers.) And I have found only one case in which a carer's expertise has outweighed the bare opinions and 'concerns' of social workers (but not of medical professionals).
I think the circumstances surrounding my mother in law's situation isn't going to help out. I won't go into the history of dealing with her ,it's lengthy and was challenging, but both my husband and I had as little to do with her as possible. Another story for another time. As she was self-funding, we didn't involve social services whatsoever because they weren't interested. We employed private carers for virtually everything and organised a care home when it became appropriate. We were more like administrators
Hello,
This is really interesting! I am in England, and I believe in Scotland there is a different system. I have found that I have had to really stand my ground, in lots of instances, and become the absolute expert in my mother. Fortunately having LPAs 'just' sorted in time, meant that this process was easier. My mum has a rare dementia, which is very difficult for some to manage as she can't tolerate meds. I have built up good relations with the social workers and care teams over the last few years. I also have learned a huge amount (my default is to research, and talk to as many people as possible), and am pretty active in mum's care, as her responsible person.
I keep notes, consistently, as noone else has an overview of mum's care and the various stages we have been through. I ask for update meetings, and copy everyone in who is necessary. It takes time and persistence. And I do this for my mother.
This is all advice I was passed on by various people in the sector, healthcare and charities, and I wouldn't have done it otherwise.
And it has been very helpful.
Without all this, I think mum, frankly, would not still be alive due to over prescriptions of medications last year that hospitalised her, as some did not believe mum's diagnosis. A final section 2 & 3 period in hospital has led to a strict rule that she has no meds. At last! But it took a long time.
In the new care home I believe they do not see me as an equal partner, yet, but I have experienced this previously, but had to work hard to prove my expertise in mum and build the trust to get it.
I'll be interested to hear the outcome and wider conversations.
HX
This is really interesting! I am in England, and I believe in Scotland there is a different system. I have found that I have had to really stand my ground, in lots of instances, and become the absolute expert in my mother. Fortunately having LPAs 'just' sorted in time, meant that this process was easier. My mum has a rare dementia, which is very difficult for some to manage as she can't tolerate meds. I have built up good relations with the social workers and care teams over the last few years. I also have learned a huge amount (my default is to research, and talk to as many people as possible), and am pretty active in mum's care, as her responsible person.
I keep notes, consistently, as noone else has an overview of mum's care and the various stages we have been through. I ask for update meetings, and copy everyone in who is necessary. It takes time and persistence. And I do this for my mother.
This is all advice I was passed on by various people in the sector, healthcare and charities, and I wouldn't have done it otherwise.
And it has been very helpful.
Without all this, I think mum, frankly, would not still be alive due to over prescriptions of medications last year that hospitalised her, as some did not believe mum's diagnosis. A final section 2 & 3 period in hospital has led to a strict rule that she has no meds. At last! But it took a long time.
In the new care home I believe they do not see me as an equal partner, yet, but I have experienced this previously, but had to work hard to prove my expertise in mum and build the trust to get it.
I'll be interested to hear the outcome and wider conversations.
HX
Barry - my situation is a bit different. Although I have POA and am his next of kin, on a care plan, I would be a contact, but because of my disability there are many tasks it would not be safe to do
