My ill brother was lucky but the system which helped him is now under threat

On the day the headlines were of the dire treatment of the elderly in hospital, we were attending the funeral in Yorkshire of my eldest brother, and celebrating his life.

For the last three years Malcolm was enabled by an alliance between the NHS primary care trust and the local authority to live at home, tended by teams of carers. As his condition deteriorated – he suffered from Multiple System Atrophy, an incurable neurological disorder causing gradual breakdown in all bodily functions – but was determined to stay in his own home.

When, the day before his birthday, the doctor visited because he had a chest infection, Malcolm said he didn’t think it appropriate to go into hospital.

The next day, after he had seen his birthday cards, he changed his mind.

The nearest hospital was not the one in his town, nor in the next, but in a town an hour’s bus journey away.

There was barely time to consider how difficult this would be for his regular visitors. His children arrived at his bedside, and a few minutes after midnight the next day, he died, peacefully.

One of his sons said wryly that throughout his life his timing was never good – but that he got this right: his daughter had been staying with him, and there had been a family tea party and excursions. But beyond that, my brother became ill at a good time – when primary care trusts and local authorities were working together to ensure the most suitable outcome for patients.

As a civil engineer, he worked all over Britain, and after retirement he’d used his expertise by joining a canal restoration group. He and his wife made their house a focal point for the extended family, but also took adventurous holidays, especially in Africa where their daughter lived.

His world began to close in on him soon after their last visit there in 2008, when, by then walking with two sticks, his condition was correctly diagnosed. During the months he spent in hospital that year, their dining room – the setting, not long before, of a cramped but cheerful Christmas dinner for 28 – was converted, and a care package organised so that he could live at home.

Eighteen months before his death, I sat in on a meeting between my brother and his wife and representatives from social services, primary care trust and the company providing care.

The gathering was held in what was now his study-bedroom, albeit one with hoist, wheelchair and copious contraptions to assist his daily life. My sister-in-law, hitherto a vibrant and energetic woman, was finding looking after him increasingly difficult, as she was tiring easily, her apparently arthritic hands no longer able to administer medicine and food through his stomach peg. More help was needed. It was a kind of privilege to witness how the different parties carefully negotiated their way to a new regime that satisfied separate budgets and individual circumstances.

As a result, pairs of nurses began to call four times a day, but soon the carers received training to administer food and medicines, thus cutting down the number of personnel trooping through the house, much to the relief of my sister-in-law. She, however, continued to decline inexplicably.

Three months after that meeting, she was diagnosed with Motor Neurone Disease. Across the hall from my brother’s quarters, the comfortable sitting room, full of paintings, photographs, books and memories, was converted into her bedroom, dominated by hospital bed and her wardrobe – she had always loved clothes. Six weeks later she died. It was a shocking blow. But my brother was determined to carry on living at home, and his children and carers, the NHS and the local authority, joined forces to make it possible. The care package was adjusted again. One son, who lived a couple of hours away, came weekly to stay overnight and provide on-site support; his other son and his daughter, in constant contact, made regular visits.

One bonus of living alone was that my brother no longer went into respite care as he had when his wife was alive, so that she might have a monthly break. He had done this with patience and fortitude – much required, as the quality of every one of the local homes he had tried was deficient.

In one, he was left with a blocked catheter for nearly 24 hours. In another, he fell out of bed, unnoticed, while another resident, straying at night, climbed over him and into his bed. With that sort of experience, how relieved he was to be in his own house, with his computer, continual music, and (thanks to friends) regular outings to church or to pub quiz. Visitors assisted with crosswords, helped with tax forms, did his filing. As his condition worsened, he and his children constantly thought of improvements. When he could no longer hold large pages of broadsheet newspapers, he moved onto smaller papers and then eventually The Week, even more compact. His computer keyboard was adjusted to cope with the slowing movements of his hands. One great regret was that he couldn’t eat or drink, but he still savoured thimblefuls of malt whisky from the collection he had made over the years. He developed a liking for cheesy Wotsits and Quavers, which dissolved in his mouth.

With his world and his abilities shrinking, he was particularly satisfied with the wheelchair-adapted car he bought, insured for all drivers. So there were trips to Cardiff, where his old boss organised a get-together in a pub with former colleagues, to Walsingham, to the Hepworth gallery in Wakefield in the week of its opening. But what kept him in a situation where, as he said, he still found pleasure in life, was the day-to-day care. The teams of people who organised his everyday life became his friends. There was much chatting, and a lot of chuckling.

For all the misfortune of his condition, he felt – and was – fortunate. A system of care had swung into place when – and where – he needed it.

In January I wrote to Health Minister Andrew Lansley to ask, in particular, why Primary Care Trusts were being discarded. His deputy, Earl Howe, replied platitudinously that the Government is “building on the best of what already exists” – which, curiously, involves an expensive substitution for something that has worked well. The system that helped my brother is, anyway, under threat, with strapped local authorities pressing care providers to budget less time. My brother was lucky. But what of future sufferers?

After his funeral, there was a moment of farce when the funeral car had to be jump-started. A Scottish piper played in the graveyard and a jazz trio at the wake. Several carers came and regaled us with stories. Then the family went back to the house, which had magically been stripped of all medical apparatus and was, briefly, a proper home again, and drank his whisky. My brother would have enjoyed it all.

‘Stripped of self worth’

The review carried out by the Equality and Human Rights Commission of basic care for the elderly in their home was published this week and concluded that in many cases it was so bad it breached human rights.

Highlighting cases of physical abuse, theft, neglect and disregard for privacy and dignity, the commission called for a complete overhaul of the system.

It also said that when it came to tasks such as washing and dressing, many elderly people had been dehumanised and “stripped of self-worth”.

There are currently almost 500,000 people who receive council-funded support in their own homes and the review has now called for care to be covered under the Human Rights Act.