Tuesday, 26 October 2021

My mother died happy... no thanks to the NHS

A WOMAN is backing Sue Ryder’s campaign to improve care for the terminally ill.

A WOMAN is backing Sue Ryder’s campaign to improve care for the terminally ill.

Clare Sherriff, whose mother Yvonne Johnston died at the charity’s hospice in Nettlebed last year, says everybody should be able to die in comfort.

She has shared Mrs Johnston’s story in a new report called A Time And A Place, which calls on the NHS to provide better services for patients in their final days.

The document, part of Sue Ryder’s Dying Isn’t Working campaign, says many people would choose to die in pain if it meant they could stay at home.

According to the charity’s research, almost two-thirds of the UK’s population would prefer to die at home but just 27 per cent believe this would be painless.

The report says everyone should have access to a “hospice at home” service offering pain relief and emotional support.

It also says hospital care should be improved where dying at home is not an option.

Mrs Sherriff, who lives in Medmenham with her husband David, has praised Sue Ryder for the way it looked after her mother.

However, she has echoed the charity’s concerns that others are denied a similar level of care.

Mrs Johnston, of Phyllis Court Drive, Henley, was diagnosed with pancreatic cancer in September last year and passed away, aged 86, just before Christmas.

She decided not to have treatment because of her age and opted for palliative care instead.

She was referred to Sue Ryder by Mrs Sherriff’s friend Elise Hoadley, who was then manager of the hospice at Joyce Grove.

One of the charity’s nurses visited her several times a week and gave advice on diet, medication and managing symptoms.

In October, Mrs Johnston was taken to the Royal Berkshire Hospital in Reading for an overnight blood transfusion after her health suddenly declined.

But the following morning, she caught a nurse looking through her handbag while another nurse forgot how much blood she had been given.

When she reported this to a doctor, Mrs Sherriff says he became cross with her.

Mrs Johnston chose not to complain but decided she would rather die at home than return to hospital.Mrs Sherriff said: “It is very clear to me now that the system does not work for everyone. My mother was left unsupported at the most frightening time of her life.

“She didn’t know which way to turn and neither did we. We had no idea what choices were available to us. Sadly, I am left with the conviction that the NHS cannot always provide an acceptable standard of care for the terminally ill.”

Later that month, Mrs Johnston became seriously ill again and began coughing up blood.

Her Sue Ryder nurse referred her to the hospice, where she underwent two transfusions. She returned home two weeks later.

At the time, she wrote in her diary: “From believing my luck had run out to regaining my peace of mind — Clare took me to meet Elise at the Sue Ryder hospice.

“[It was] such a professional place and Elise herself warm, sympathetic, sweet and straightforward — she and Clare have lifted the weight from my shoulders.”

Mrs Sherriff said: “She came out feeling like a new woman. For the first time since the diagnosis, she experienced the feeling of going somewhere and coming out feeling better for a while.

“People think hospices are just places where you go to die but a lot of people go there and end up feeling an awful lot better.

“The standard of nursing that she received was something we didn’t believe existed in today’s world. It was quite remarkable.”After returning home, Mrs Johnston’s condition continued to worsen. She returned to the hospice as she could no longer cope at home with her symptoms and died on December 19.

Mrs Sherriff said: “She had begun to feel out of control. I can’t imagine how we would have coped without the almost daily advice of the Sue Ryder community nurse, particularly with the medication.

“By the nature of the disease, the symptoms changed constantly to a point where daily or even hourly changes to the medication were necessary. She was delighted to return to Nettlebed, it felt like home.

“Luckily, there was a bed available for her and she chose to spend her last days in the hospice, where she felt confident and happy.”

Following her mother’s death, Mrs Sherriff has become a supporter of the Dying Isn’t Working campaign. She spoke at the charity’s 60th anniversary party at the House of Commons in July, addressing MPs, peers and health policy advisers.

She said: “I am not a healthcare campaigner but following my mother’s experience it is something I feel quite strongly about.

“Her story is a wonderful one — if you could speak to her today I am sure she would say she had a beautiful death. She was lucid and pain-free until her last day and that is quite something in my opinion.

“We are all going to be old one day. You would not want your mother or father to die alone in a soulless place without proper care and attention.

“We were the lucky ones but I cannot help but wonder what happens to those who are not so fortunate.”

The Sue Ryder hospice has been based at Joyce Grove, which was previously owned by Scottish banking magnate Robert Fleming, for 34 years. It has 12 beds and offers inpatient stays of up to two weeks. As well as medical and nursing care, it provides complementary therapies and counselling.

When the redevelopment of Townlands Hospital in Henley is completed, the hospice will move to a new purpose-built premises on the site with the same number of beds.

Pamela Chatfield, palliative care services manager, said: “Everyone deserves a pain-free death in the place of their choosing and surrounded by loved ones.

“[Our nurses] bridge the gap between pain and symptom management at home and the need to be surrounded by loved ones in familiar settings.

“Not only do services like this need to be much more widespread, but health professionals need to provide more information about end-of-life care options to ensure people can die pain-free in the setting of their choice.”

Claudia Wood, Deputy Director of think-thank Demos, which carried out the charity’s research, said: “For years, health professionals and the Government have been striving to make sure people die in their preferred place — often at home.

“But a blinkered focus on dying at home has meant other settings, such as hospitals, haven’t improved what they offer people at the end of life. “It also leads us to an uncritical view of dying at home, when we know this can be difficult and traumatic.

“A well-supported, high-quality experience should be on offer regardless of where someone dies. We have to deliver what people want. It’s time the debate matured from the ‘where’ and focused on the ‘what’.”

Henley MP John Howell, who attended the campaign launch, said: “The care and emotional support doctors, nurses and care staff provide to people living with life-limiting conditions through Sue Ryder’s hospices are priceless.

“There are clearly a number of issues they wish to raise about care at the end of life and I am grateful for them raising them. It is for them to decide which aspects of this they will campaign on and I would not wish to prejudice what they are doing.

“However, I do believe the flexibility they are asking for is absolutely crucial.”

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