By Anna Severwright
Earlier this week I gave evidence at the Health and Social Care Committee’s inquiry into social care funding and workforce (what a long title!)
I was really pleased that the committee heard from Daphne who cared for her mother, Dorothy, who had dementia and me, as someone who uses social care, in this hearing as it means the voice and knowledge of lived experience is also heard and learnt from alongside the other experts.
Here is a summary of what I said:
(in response to the first session on integration)
- As someone who uses both health and social care services, I just want all the different bits of health and social care to be working together towards the same goal, that is set by me and to best be able to get on with my life.
The structure or system doesn’t matter- the outcome does and the impact on people’s lives
Big is not always better- The NHS is huge but my many teams and professionals currently don’t talk to each other, so bringing in social care won’t improve things by default. All these people, including social care need to be working together around the person- me.
(in response to the impact funding has on social care)
- As someone in my 30s who needs support from social care (due to physical disabilities) I have strongly felt the impact of funding cuts.
I am grateful that social care keeps me clean, fed and watered but I am not living a normal life. I never go out in evenings or Saturdays as I don’t have enough hours.
The assessment for social care chunk me up into tasks ‘how long for a shower/ to get dressed/ prepare food’ but they don’t start with what do I want from life and how can we support you to best live that life? These tasks are not what make life worth living.
I have often been in the situation where I have to choose between using my hours to have a shower or do the food shopping or meet a friend and that’s a really hard way to live.
- We know about the funding cuts and fear our care packages being cut. When I receive my review letter, I feel so scared as the result is completely out of my control. I know so many other people who feel the same way. These fears are not unfounded as many have had large cuts, up to a third of their hours, that’s a third less life that person can now live.
- I use direct payments (DPs) to employ personal assistants (PAs). This is great as it means I can choose who comes into my home, but does mean a lot of admin and employment responsibilities. But the local authority (LA) pay a low hourly rate for care which means that the PA role is low waged and makes recruitment and retention of PAs a challenge (as they are in all areas of social care.)
- DPs were a fantastic idea, designed to give choice and control to people over their lives. But gradually as funding and budgets have been progressively cut, LAs have looked to claw back control. They do this by increasing scrutiny over how the money is spent and bringing in lots of rules about how you can (and can’t) use your DP. For example My PA can’t assist me to attend medical appointments as that is a health need, but if I stop attending appointments my condition would deteriorate and I would need more care in the future. They do not trust me to use the money in the best way to meet my care needs and more importantly live a normal life.
Power is in play here- Letters I receive have in bold that if I don’t reply in 14 days my DP may be stopped. This is a threat to stop my care.
- If I received CHC (Continuing Health Care) or a PHB (Personal Health Budget) from health my care would be free, but because I receive DPs I am means assessed for financial contributions. It is a very complicated assessment and a long burdensome form every year. There is no lifetime cap, so having needed care from my 20s, potentially into my elderly years, I could have spent a lot of money on essential care. This care is not a luxury that I fancied having, but need through no fault of my own, but compared to friends my age I am financially penalised. It is also a disincentive to save, as if I save money over £14,250, that starts to get taken towards my care or I become a self funder.
But finally, and my main point, what are we funding for?
If we increase funding to fund more of the same we will be failing social care.
I have never met someone in their middle or older age that says they hope their family send them to a care home, indeed I hear many say they fear having to go into residential care. We should not have a social care that people fear and see as a last resort.
And people my age or who care for loved ones, talk about the constant fight with the system, just to be able to get some support. But not being able to get on and live a normal life.
“So if we believe, as I hope we do, that disabled people, older people, people with learning disabilities… deserve an ordinary and good life like everyone else…. To be part of the community, able to live in their own homes and contribute to society, because we have a lot to offer too, then we need to fund a social care system that allows that to happen.”