Tim Hull, 56, of Worcester, England, suffers from two hereditary ailments, both of which are treatable. But after being bumped around from doctor to doctor with lengthy waits in between and receiving no support from the National Health Service (NHS) since returning home from the hospital last year, he has decided to end it all rather than remain bedridden, uncomfortable, and unable to eat solid foods.
The BBC reported July 29:
Tim … first went to his GP [general practitioner] in 2022 because he started stumbling while walking.
He was referred to a rheumatologist. He waited a year for the appointment only to be told it was the wrong specialism.
He then waited several months to see a local neurologist, then several more months to see a more senior neurologist in Birmingham. In the two years this took, he lost the ability to walk and had to use a wheelchair.
Tim was eventually diagnosed with a rare neurological condition, Hereditary Spastic Paraplegia (HSP), which causes spasms and muscle weakness. Pain, fatigue and depression are also common symptoms.
It is incurable, but according to the NHS website, it does not usually affect life expectancy. There are more than 80 variants, but Tim says he has yet to be told which he has. Physiotherapy and drugs are generally used to manage the symptoms, but Tim felt after being diagnosed he was just expected to “get on with it.”
Hull spent two months in the hospital last year, where regular physical therapy “helped him regain some mobility, but after he was discharged there was no ongoing support,” noted the BBC.
He was referred to a Worcester neurology therapy team, who sent him a letter telling him he was on the waiting list for an assessment. A year later, he got essentially the same letter again. His general practitioner has been no help.
Getting nowhere with his supposedly free and guaranteed healthcare, the 6’ 10” Hull did the best he could to make his home life as comfortable as possible, wrote the BBC:
He used all his savings to adapt his home and buy equipment so he could live downstairs, but spent two years in a standard hospital bed, provided by the NHS, which was too small for him. He describes it as “hideously uncomfortable” and like “torture.” Three months ago, he was finally given a new, longer bed, but that causes him to sit up in a position that he says led to a major choking incident one mealtime. He now mostly has meal-substitute drinks.
Finding a hoist to lift him in and out of bed has also been a major problem. The first two tried by the NHS were too small to be used safely.
At the end of April, there was discussion about putting in a ceiling hoist. Two-and-a-half months on they are still waiting. It means Tim has not been able to leave his bed since February this year.
He is also waiting to be fitted for a wheelchair that can cope with his height, but that cannot happen until there is a hoist to lift him out of bed.
“Life is just lying in a bed on a day-to-day basis, feeling very uncomfortable, fighting to get support,” says Tim.
Death of Despair
Hull also suffers from a hereditary kidney condition, but a transplant two decades ago has kept his urinary system functioning up to now. After deciding in February that his situation was hopeless, Hull stopped taking the pills that prevented the transplanted kidney from failing. Now he knows the end is imminent, and he has accepted it.
“I don’t feel that things are going to get any better than this,” he said. “I just feel [ending my life] would be a better option than lying in bed 24 hours a day.”
When Hull’s sister tried to obtain medical help for him, she got the same runaround he did. The only assistance she received was from the local hospice, which is helping make his final days as pleasant as possible. According to the BBC, “It also arranged for a psychologist to check he had capacity to make his end-of-life decision” — something Hull says clinicians asked him “several times, but no-one has ever asked what can be done to make him rethink.”
Sadly, Hull is not alone in his suffering. The BBC claimed that it has heard from “the families of more than 250 people with serious disabilities or illnesses” who have encountered much the same frustration.
The government has no real solution to these problems, and it refuses to consider the one reform that would actually work: disbanding the NHS and letting the market deliver healthcare.
It is, however, considering a bill to legalize assisted suicide for patients who are expected to die within six months. As with most such bills, proponents claim there are sufficient “safeguards” in place to prevent abuse. They also deny the possibility that eligibility for assisted suicide will be expanded over time because it is an easy way for cash-strapped government health systems to save money — even though this has happened in every jurisdiction that has legalized the practice.
Hull, who is only terminally ill by choice, would probably be a candidate for assisted suicide under the bill. One hopes that stories such as his will cause legislators to rethink their support for the measure before it is too late.