I am one of the unpaid carers you refer to in your editorial (The Guardian view on the future of social care: a chance for Labour, 8 June). My 62-year-old husband, who has early-onset dementia, was diagnosed when he was 58. He hasn’t worked since he was 56, and I was forced to retire a year ago. Thinking about how we will pay for his future care keeps me awake at night. My husband had stage 4 cancer at 49, but I recall that I was relieved not to have to worry about money, as we were protected by sick pay.
Because my husband has dementia, the care he needs is deemed to be social, not medical, and so I am looking at crippling care fees, with him in a home or with a patchwork of carers at our home. I have no idea how we will fund this; it will drain our savings. I want my husband to have the dignity and care he deserves, but how long will I be able to provide it without having to sell our home? This is so unfair and exacerbates an already nightmarish situation.
Caroline Nolan
Stamford, Lincolnshire
Hilary Osborne’s article (People call me brave for going through cancer treatment – but the scary bit starts now, 8 June) mentions the carers of people with cancer and that some of them don’t feel brave. I’m the partner of someone with terminal cancer and I don’t feel brave at all. Nor do I think I should.
I feel a range of emotions – anger, frustration, grief, loss, overwhelming sadness, loneliness and bonetiredness. All this is exacerbated by the many and repeated failures of NHS systems to communicate with each other and to keep the patient in the loop.
The need to coordinate my partner’s care – which involves the hospital providing the cancer treatment, two other hospitals providing treatment for related conditions, plus the GP surgery – is exhausting. I must deal with scan and blood test appointments and results, changes in medication, checking that consultants’ letters with such changes have been sent to the appropriate people (and indeed are accurate) and travel arrangements. At times, I simply feel like his medical PA. I can’t remember the last time I felt like me.
Name and address supplied
Denise Wilkins’ experience (Dear Jeremy Hunt, I’d love to get a job. But thanks to your social care crisis, I can’t, 5 June) spoke to me directly. As I visited my wife (secondary progressive multiple sclerosis, undergoing orthopaedic surgery) on her rehabilitation ward in our local general hospital, the ward sister greeted me: “Ah, you must be the full-time carer?” I explained that I am the full-time worker, who also cares. My role was assumed. The Department of Health and Social Care assumes.
Jonathan Kempster
Hemel Hempstead, Hertfordshire
Polly Toynbee is right that social care must be a priority for any future government (Labour won’t be able to instantly fix every Tory failure. But social care would be a good place to start, 8 June). Social services have been overlooked by every government since the welfare state was created in the 1940s. And too often, debates about funding ignore social care’s vital role for people living with mental illness.
Social services are essential to help people live independently. They fund local community groups that reach people other services don’t and they provide support for carers. It’s time to put social care on a par with health services, so that no one is left without the right support for their mental health.
Andy Bell
Centre for Mental Health, London