Carer Support-Whats there and whats missing!

Kelvin-Dementia Carer and Tim Hunt from Patient Opinion.

This blog is written following a review of some of the very powerful postings on the Patient Opinion Site about dementia care in South London.  Important to say from the beginning that there is a lot of positive feedback about individual services.  However time and again there are comments about the fragmented nature of services, the lack of continuity and how this makes Carers feel!

For example comments about being left without access to specialist support:

“Both of us feel disappointed that we will not have that regular contact with a specialist in the field, particularly when they were so understanding and helpful”.

“If anything I wish it was all more integrated..as I was able to give up work and live off Carer's allowance because I have another income I could spend the time doing all the chasing. I wonder how do people who are still working or the elderly manage? Carers shouldn't have to keep notes and keep chasing for services to which their relatives are entitled.”

Carers are quick to point out what is helpful and how things could improve- “the Mental Health Team seem to work well, presumably because they have a specific and tight brief. Maybe social services should be made up of small units like this” 

Kelvin recounted his own experiences trying to take on more self management of his own situation.    But for this approach to work, carers need to be able to access help when they need it, have the information presented to them in a comprehensive and easy to understand way.  What also comes across is that people need access to professionals in health and social care who have expert knowledge. 

Reminds us of the old proverb,  “give a person a fish and you feed him for a day; teach that person to fish and you feed them for a lifetime”  Support needs to be there that sustains and empowers, not just in response to crisis.  

We shared a fear for carers of the consequences of not getting proper support of situations breaking down especially as services get more and more tightly squeezed-“ they used to give all carers 12 hours a month respite care. This was managed by a respite manager, but now everything is more tightly controlled and it has to go through Social Services”

Our present carers can quickly become patients and service users, best to prevent situations becoming more complex and ultimately more expensive.

So what might the answers be:

Give Carers a more powerful voice, they know whats going and and how it can improve.

Look at how services are integrated around the needs of the patient and the carer.

Ensure continuity for the carer across health and social care.

Have a look at the Postings on the Patient Opinion Site and send in some comments:

https://www.patientopinion.org.uk/opinions?frompopulation=Q36&tag=dementia