I've Stopped Life-saving Medication Says Man Exhausted By Fight For Nhs Care

Tim Hull tin constituent to galore achievements during his 56 years. He's tally his ain handyman business and housed Ukrainian refugees for 2 years. He's moreover been successful nan Guinness Book of Records: astatine astir 7ft successful height, he and his relative were nan UK's tallest twins for almost 2 decades.

But it is simply a life Tim has decided to end. His value of life, he says, is "very, very low". Tim has a aesculapian information - unrelated to his tallness - that weakens his muscles, and his wellness has declined quickly complete nan past 2 years.

It is nan battles to get nan wellness and attraction support he needs which person driven him to make nan hopeless decision, says Tim. He feels abandoned by wellness professionals, has been moved from 1 waiting database to another, has not been provided pinch nan correct instrumentality to thief him and has been bed-bound for astir 7 months.

In February, he stopped taking nan medicine that prevents his kidneys from failing. They are now opening to springiness up and he knows he has months, if not weeks, to live.

"I don't consciousness that things are going to get immoderate amended than this," he tells BBC News. "I conscionable consciousness [ending my life] would beryllium a amended action than lying successful furniture 24 hours a day."

Tim's neurological information is rare, however, galore of nan difficulties he has faced consciousness acquainted to many.

Over nan past 2 years, BBC News has been contacted by nan families of much than 250 group pinch superior disabilities aliases illnesses astir their struggles to entree wellness and attraction services.

Many described nan effect of very agelong waits for assessments, appointments, and for captious instrumentality that tin thief them header astatine home.

They besides highlighted nan frustrations of trying to get personification to signpost nan correct services, being passed from section to department, and nan emotion that they were only listened to erstwhile they reached a crisis.

For immoderate location were besides lengthy arguments complete whether their attraction should beryllium paid for by nan NHS aliases section councils.

Tim, who lives connected his ain successful Worcester, first went to his GP successful 2022 because he started stumbling while walking.

He was referred to a rheumatologist. He waited a twelvemonth for nan assignment only to beryllium told it was nan incorrect specialism.

He past waited respective months to spot a section neurologist, past respective much months to spot a much elder neurologist successful Birmingham. In nan 2 years this took, he mislaid nan expertise to locomotion and had to usage a wheelchair.

Tim was yet diagnosed pinch a uncommon neurological condition, Hereditary Spastic Paraplegia (HSP), which causes spasms and musculus weakness. Pain, fatigue and slump are besides communal symptoms.

It is incurable, but according to nan NHS website, it does not usually impact life expectancy. There are much than 80 variants, but Tim says he has yet to beryllium told which he has. Physiotherapy and narcotics are mostly utilized to negociate nan symptoms, but Tim felt aft being diagnosed he was conscionable expected to "get connected pinch it".

In 2024, he spent 2 months successful hospital. While there, regular physio helped him regain immoderate mobility, but aft he was discharged location was nary ongoing support. His lawsuit was referred backmost to Worcester and its neurology therapy team.

Tim received a missive dated 10 July 2024 welcoming him and saying he was connected nan waiting database for an assessment. Despite chasing for an appointment, he says he heard nothing. A twelvemonth later, connected 15 July 2025, he sewage different almost identical letter. It says welcome, you are connected a waiting list. This clip it included an accusation leaflet.

When Tim has asked his GP for help, he says he has often been told his lawsuit is excessively master and he should telephone 111.

Tim's tallness has added to his difficulties. Getting nan basics correct for personification who is 6ft 10in (2.08m) has seemingly been impossible.

He utilized each his savings to accommodate his location and bargain instrumentality truthful he could unrecorded downstairs, but spent 2 years successful a modular infirmary bed, provided by nan NHS, which was excessively mini for him. He describes it arsenic "hideously uncomfortable" and for illustration "torture". Three months ago, he was yet fixed a new, longer bed, but that causes him to beryllium up successful a position that he says led to a awesome choking incident 1 mealtime. He now mostly has meal-substitute drinks.

Finding a hoist to assistance him successful and retired of furniture has besides been a awesome problem. The first 2 tried by nan NHS were excessively mini to beryllium utilized safely.

At nan extremity of April, location was chat astir putting successful a ceiling hoist. Two-and-a-half months connected they are still waiting. It intends Tim has not been capable to time off his furniture since February this year.

He is besides waiting to beryllium fitted for a wheelchair that tin header pinch his height, but that cannot hap until location is simply a hoist to assistance him retired of bed.

"Life is conscionable lying successful a furniture connected a day-to-day basis, emotion very uncomfortable, fighting to get support," says Tim. "Above a definite height, you don't exist.

"I'd had capable of surviving nan measurement I was. I couldn't spot myself getting immoderate amended and decided I didn't want to beryllium present anymore," he says. The wellness and attraction system, he adds, "hasn't worked. There's nary joined-up thinking. Nobody cares."

Authorities responsible for Tim's attraction opportunity they cannot remark connected individual cases but that they regularly reappraisal really attraction is delivered to meet each person's "unique needs".

Herefordshire and Worcestershire Health and Care NHS Trust says that "where equipment, location adaptations aliases organization nursing support are required, we purpose to person these successful spot [before discharge] to guarantee a safe, good supported modulation from infirmary to home".

Tim has a separate, hereditary kidney condition, called polycystic kidney disease. His copy Andy, their begetter Alan and sister Sue were besides calved pinch nan condition.

Twenty years ago, Tim had a kidney transplant from his older brother, Richard. Tim's twice-daily tablets are expected to extremity nan kidney from failing.

Without them Tim knows he has months, if not weeks, near to live. He feels he has small prime but to extremity taking nan tablets.

Sue, a retired children's societal worker, says she is devastated by Tim's decision.

"He doesn't request to beryllium lying present dying. He's sewage truthful overmuch much to give," she says. "And I conscionable consciousness that he's been wholly abandoned."

She spends astir each time caring for him and has made endless calls to effort to get him nan support he needs.

In February, Sue made urgent calls to Tim's GP, section intelligence wellness services and big societal services because he was truthful low. Again, she says she was passed from pillar to post, and that getting thief was a fight. There was "no joined-up thinking", she says.

Six months aft stopping nan tablets, Tim says he does not regret it.

But pressed connected what would make a difference, he says: "If I could beryllium hoisted retired [of bed] and sat up to person dinner, if I could beryllium wheeled retired into nan plot conscionable to get a alteration of scenery, that could thief a lot."

A friend suggested Sue should interaction nan section hospice. It has now go nan cardinal constituent of advice, support and accusation that Tim desperately needed 2 years ago. It manages his symptom medicine and has helped him get NHS backing for 4 attraction visits a day. It besides arranged for a scientist to cheque he had capacity to make his end-of-life decision.

He says he's been asked that mobility by clinicians respective times, but no-one has ever asked what tin beryllium done to make him rethink.

The tragic irony that it took nan move to end-of-life attraction to get them much joined-up thief is not mislaid connected Sue, but she says it is still not capable to supply nan level of support he really needs.

"I consciousness perfectly heartbroken by nan situation," she says. "I deliberation I've gone beyond anger. I conscionable can't judge that nan UK would let this to happen.

Tim's section NHS Trust says "we activity successful adjacent business pinch different wellness and attraction organisations to make judge patients acquisition joined‑up care. Multidisciplinary teams (MDTs) bring together professionals from different specialisms to regularly reappraisal each patient's needs".

NHS Herefordshire and Worcestershire Integrated Care Board (ICB) says it regularly reviews really attraction is delivered to "make judge it meets nan needs of patients and is some safe and effective". It besides says it has "clear systems successful spot to respond to immoderate concerns, study from incidents, and continuously amended attraction crossed nan full system".

The ICB says it intends to "ensure everyone feels seen, heard, and supported – nary matter their individual circumstances".

The Department of Health and Social Care (DHSC) says "it is unacceptable that Mr Hull has not received nan attraction he deserves" and that it is moving to guarantee everyone has entree to high-quality care.

The DHSC says its 10-year wellness scheme will "shift healthcare retired of hospitals into nan community, to guarantee patients and their families person personalised attraction successful nan correct place, astatine nan correct time". It besides says it is investing an further £100m into hospices and end-of-life care.

Tim is now overmuch frailer, and connected very beardown painkillers. He says successful nan clip he has near he wants to beryllium "as comfortable and supported arsenic possible," adding that "there's a batch of fearfulness of nan chartless pinch nan decisions I've made".

If you are suffering distress aliases despair, specifications of thief and support successful nan UK are disposable astatine BBC Action Line.