Long-time carer shut out of disabled man's care

A Dartmoor woman is calling for urgent intervention after saying her terminally ill friend has been left with virtually no meaningful choice over who provides his complex care — despite months of concerns and repeated requests for change.

Trelawney Whitehead has advanced Huntington’s disease and is completely dependent upon 2:1 care in his own home in Drewsteignton.

For almost ten years, his friend and attorney Robyn Jordan, who also lives in the Dartmoor village, helped build and lead the long-standing team around him.

Some members of that team supported Trelawney for seven years or more and developed detailed knowledge of his communication, movements, eating, swallowing, medication, equipment, routines and personality.

But after responsibility for his care transferred to a large care company in March 2026, Robyn says the stable world around him began to fall apart.

She says experienced staff have gone while serious safeguarding concerns have been raised. Concerns have also been raised about staffing, use of unfamiliar agency workers, medication, nutrition, choking risk, continuity and whether Trelawney’s required 2:1 support has always been maintained.

Members of staff who reported safeguarding concerns externally have subsequently faced gross misconduct processes.

Robyn’s own ten-year role ended shortly after the new provider took over in April, in circumstances now forming part of an Employment Tribunal. But she said this was no longer about her.

It is about about Trelawney.

Robyn said: “This is not a disagreement about procurement or hourly rates. This is the remainder of somebody’s life. Trelawney cannot walk away from a care provider he does not want. He cannot independently leave his house when his equipment fails. He is completely dependent on other people making the right decisions for him.”

“For years he had people around him who knew him intimately — his tiny movements, expressions and signals. They knew when something was wrong. One by one, those people have disappeared from his daily life. We have spent months trying to get somebody to listen. Now we are being told there is not even a promise that his provider will be changed and that cost may decide whether an alternative is approved.. Where is Trelawney’s choice in any of this?”

Robyn says there is extensive documentary evidence relating to the case, including NHS correspondence, safeguarding communications, incident records, provider correspondence and accounts from people who have supported Trelawney.

She is now calling for an urgent senior review by NHS Devon ICB and for somebody independent to examine what has happened.

She has also contacted her MP, Sir Mel Stride, asking him to intervene.

Robyn said:“I am not asking anybody simply to believe everything I say. I am asking somebody independent to look at the evidence.

Trelawney is not a care package. He is not a panel decision. He is not a comparison between two hourly rates.”

“He is a human being whose remaining life is disappearing while organisations debate process and cost.“I am terrified that we are going to lose him before anybody with enough authority finally says: this has to stop.”

Robyn is supported by Trelawney’s two brothers, one in London, the other in the Lake District.

His brother Joel said they wanted care to be returned to a team led by Robyn. and not the current arrangement.

“As far as we’re concerned, they are killing our brother. He doesn’t like the situation so he’s not eating or drinking. It has got to the point where I’m worried for my brother’s life. As far as they are concerned we are troublemakers. It’s an awful, awful situation.”

A spokesperson for NHS Devon said: "We understand the concerns that have been raised about Mr Whitehead's care and recognise how important it is that he receives safe, consistent and high-quality support.

“As this relates to an individual's care and personal circumstances, it would not be appropriate for us to comment on specific details. However, we are actively working with Mr Whitehead's representatives and the organisations involved in his care to consider the best way forward.

“Our priority is ensuring that Mr Whitehead's assessed health and care needs continue to be met appropriately, safely and with his wellbeing at the centre of decision-making. We continue to work closely with Mr Whitehead and his representatives throughout this process."