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The ongoing fight for care

This is the second article in our series of interviews with people in the northwest who are dealing first-hand with council cuts, new or increased care charges and welfare reform changes (the first article is here). There is a list of cuts and changes affecting this service user at the end of the post.

The first time I meet LH*, she's bright-eyed, talkative and feeling reasonably well – an articulate, witty woman sitting straight in her electric wheelchair at a gathering in the centre of her local town (she lives in the northwest, in a town about half-an-hour's drive from Liverpool).

Things are different the second time around.

I go to her house and find her unwell and in bed – pale, a small figure lying next to a red plastic container that her carer left out in case she needs to be sick. She's alone. She can't get out of bed, because she does not walk well unaided and she's worried about falling.

She is alone “because I've run out of carer hours for this morning,” she says grimly.

LH has severe arthritis (she was diagnosed when she was two). She must rely on an electric wheelchair to get around. She is entitled to about five hours' care a day - she uses direct payments to pay a care agency to supply her with carers for those hours. This morning, her carer had to leave at 10am to go to her next job.

I found LH's front door unlocked when I arrived. She left the door open, she says, because she's expecting a delivery and knew she wouldn't be able walk to the door to get it. Sometimes, she has to do that. “It isn't always gloomy like this,” she says. “Some days you will see me out and about. But this is what happens on days like today... rheumatoid arthritis can flare up at any time. I get these days when I can wake up and I am very shivery...I've had a chest infection, so I think that might have been what brought it on.”

LH is nearing 50 and her condition has begun to deteriorate. Her problem is finding and funding enough care to meet her needs, particularly on difficult days like today. The five hours a day don't always stretch and even on good days, she has to make compromises. Carers to come in each morning to get her up and help her bathe and dress. They return in the middle of the day, then later on, to help her get ready for bed. The compromise there is that because of time and funding constraints, they often must get her ready for bed by 5.30pm. She's an adult with friends and active social life and getting ready for bed at 5.30pm "isn't always what I want, especially when it's summer. I wouldn't mind going to sit outside sometimes.”

A couple of years ago, her social worker mentioned that she might have been a candidate for the Independent Living Fund – a fund that was established to help people with disabilities pay for the extra care that they needed to continue to live in their own homes. Unfortunately, the ILF closed to new applicants. LH feels that she has lost an important alternative option because of that.

LH describes her local council as “very good and supportive,” and feels there is little point getting upset with people there about her care hours - the council recently awarded her an extra six and she's trying to work with that.

She also worries that her concerns about her care could ultimately compromise her independence - that the council will decide that she can't cope alone and move her to a carehome. (The irony of that, she says, is that her council has told her that it doesn't have a carehome that is suitable for her right now). She has a housing trust home and you only need five minutes in it to know that she's put her heart into it. It is a work of art if a house ever was one - each room is retro-bright and beautiful, with flowered walls, bright surfaces, lustrous curtains and gleaming lamps. Staying in it means battling for money for extra care hours, keeping quiet about the bad days and juggling the funds for care that she has.

“I've got a few (care) hours in reserve, but I have to monitor and preserve my hours ... if I stay like this (unwell) all day for two days, that would be one week's care allowance gone and what do I do the rest of the week for care?”

The care agency LH uses has just increased its fees, too: “They have just sent me a letter saying that their costs have gone up. I think the increase will have to come out of my reserve pot.”

She expects that there will other pressures on that money soon, too. Like so many others, she's waiting for her work capability assessment forms to arrive and when they do, she will need help to fill them in.

“As I'm not able to write very well because of the arthritis in my hands, I'm going to have to pay a carer to help me complete them.” She thinks that the other option is to pay a carer to accompany her into town to a local disability services support organisation. Staff there could help her fill in the forms while her carer waits. The assessment itself is much on her mind. LH will also have her DLA entitlement assessed. At the moment, she gets the highest rate for care and mobility. She was awarded a lifetime DLA entitlement from an early age, because of the severity of her disability, but that has changed (see page 7 of linked pdf). She will be reassessed “in case my condition has improved,” she says. “I can dream.”

*Name withheld

Key changes affecting and concerning this service user:

  1. Closing of the Independent Living Fund to new applicants
  2. Increased care agency charges
  3. Work Capability Assessment (for Employment and Support Allowance)
  4. Disability Living Allowance reassessment
  5. NHS reform – effects to be seen. LH is a regular user of NHS services and has had operations. She also relies on medication and is concerned that charges will be introduced for expensive medication that the NHS pays for at the moment.

Useful sites:

Kate Belgrave blogs on the experience of public service users facing cuts.


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