Man Says He Stopped Life-Saving Meds in Frustration with NHS Fight

A Life of Struggle and a Desperate Decision

Tim Hull has lived a life marked by resilience, determination, and unique challenges. Over the course of 56 years, he has run his own handyman business, provided shelter for Ukrainian refugees, and even held a place in the Guinness Book of Records as one of the UK’s tallest twins. However, his story is now defined by a painful struggle with his health and an increasingly bleak outlook on life.

Tim suffers from a rare neurological condition that has left him physically weakened and unable to move independently. His quality of life has deteriorated rapidly over the past two years, and he feels that the support systems meant to help people like him are failing. He describes his current state as “very, very low,” and says he is no longer able to live comfortably.

The decision to end his life was not made lightly. Tim feels abandoned by the healthcare system, frustrated by long waits for assessments, appointments, and necessary equipment. He has been moved between waiting lists, denied proper support, and forced to live in bed for nearly seven months. In February, he stopped taking medication that prevents his kidneys from failing, knowing that he has only months—possibly weeks—to live.

“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.”

While Tim’s condition is rare, the challenges he faces are not uncommon. Over the past two years, reports have emerged from families of more than 250 individuals with serious disabilities or illnesses who have struggled to access adequate health and care services. Many describe long waits for assessments, delays in receiving essential equipment, and frustration in navigating a fragmented system.

The Long Road to Diagnosis

Tim first sought medical attention in 2022 when he began stumbling while walking. He was referred to a rheumatologist but was told the specialty was incorrect. After months of waiting, he saw a local neurologist, then a senior specialist in Birmingham. By the time he received a diagnosis of Hereditary Spastic Paraplegia (HSP), a rare neurological condition, he had already lost the ability to walk and required a wheelchair.

Despite being diagnosed, Tim felt that his care was inadequate. He was given little guidance on managing his symptoms and was expected to “get on with it.” In 2024, he spent two months in the hospital, where physiotherapy helped restore some mobility. However, after discharge, there was no ongoing support, and his case was referred back to Worcester.

For over a year, he waited for an assessment, receiving letters that were essentially the same each time. He described the lack of progress as “torture” and felt that the system failed to address his needs.

Height Complicates Care

Tim’s height—6ft 10in—has added another layer of difficulty. He used all his savings to adapt his home and purchase equipment to allow him to live downstairs. However, the NHS provided a standard hospital bed that was too small, causing discomfort and pain. It took two years before he was given a longer bed, which caused a choking incident. He now relies on meal substitutes and struggles to maintain his nutrition.

Finding a hoist to lift him out of bed has also been a major challenge. Two NHS-provided hoists were too small to use safely, and a ceiling hoist remains uninstalled after two-and-a-half months. Without it, Tim has been bedridden since February. He is also waiting for a wheelchair suited to his height, but that cannot happen until the hoist is in place.

“Life is just lying in a bed on a day-to-day basis, feeling very uncomfortable, fighting to get support,” he said. “Above a certain height, you don’t exist.”

Family Support and Frustration

Tim’s sister, Sue, a retired children’s social worker, has been caring for him daily. She has made countless calls to try to secure the support he needs but often faces resistance and confusion. She described the process as “passing from pillar to post” and criticized the lack of coordinated care.

In February, she reached out to multiple services after Tim’s mental health declined, but again, she found herself stuck in a loop of bureaucracy. “There’s no joined-up thinking,” she said.

A Shift Toward End-of-Life Care

It was only after Tim moved into end-of-life care that he began to receive more support. A local hospice became a central point of advice and assistance, helping manage his pain and securing funding for four daily care visits. A psychologist also assessed his capacity to make end-of-life decisions.

However, Sue believes this level of support should have come earlier. “It’s tragic that it took moving to end-of-life care to get the help he needed,” she said.

System Responses and Ongoing Challenges

Authorities responsible for Tim’s care have stated they cannot comment on individual cases but emphasized their commitment to meeting patients’ unique needs. They highlighted efforts to ensure safe transitions from hospital to home and to provide appropriate equipment and support.

The Department of Health and Social Care acknowledged that Tim’s experience is unacceptable and reiterated its commitment to improving access to high-quality care. It also mentioned investments in community-based care and end-of-life services.

For now, Tim is focused on comfort and support during the time he has left. He wants to be as comfortable as possible and acknowledges the fear that comes with his decisions.

If you or someone you know is struggling with distress or despair, support is available through various UK organizations.