A man from Colby claims that his brother almost lost weeks of his life due to confusion over a treatment form.

Malcolm Penrose was a resident at Brookfield Nursing Home in Ramsey after being left disabled by a brain tumour back in the year 2000.

He died of a ruptured intestine on July 14 this year.

Around six weeks earlier, his brother Lee Penrose returned from a business trip to find that Malcolm had been admitted to Noble’s Hospital with a twisted intestine.

An ambulance had been called to Brookfield after Malcolm reported experiencing pain.

But Lee says paramedics initially refused to take him to the hospital because Malcolm had earlier agreed to be made the subject of a ‘Treatment Escalation Plan’ (TEP), a form which has been introduced in the UK and by Manx Care.

Definitions of TEPs vary but a document published by the East Kent Hospitals University NHS Foundation Trust published in 2021 says the forms act as a ‘record of discussions between patients and their healthcare professionals regarding the treatment they should receive in emergency situations’.

However, Lee claims that confusion surrounding his brother’s form meant that paramedics thought he did not want to be treated.

Lee says his brother could have died over a month earlier than he did had his family not intervened.

He is now calling for family members to be involved in the TEP process to avoid similar incidents from happening in the future.

He said: ‘The ambulance refused to take my brother because of the TEP - they took this as a reason to not take him in for further treatment.

‘I didn’t know anything about the form, but I thought if my brother’s agreed to something like that and it is an end-of-life issue, then maybe it is right to withhold all treatment.

‘It was a really difficult situation.

‘But I thought that we needed to at least know whether it's something that was treatable and could extend his quality of life, or whether it's treatable but wouldn't extend his quality of life.

‘I spoke to a GP and a second ambulance came. The staff at Brookfield eventually managed to get Malcolm into an ambulance and get him to Noble’s.’

Once at the hospital, Mr Penrose says he was eventually told that Malcolm’s twisted intestine issue was in fact treatable.

That treatment eventually gave Malcolm six more weeks of his life, Lee said.

Lee added: ‘Treatment gave him an extra month, during which he was back to normal at times.

‘We took him out to celebrate his 66th birthday and he was able see his son and daughter, our mum and my family. His son and daughter remarked he seemed very happy the last time they spoke to him.’

Lee was later told by staff at Brookfield that a ‘couple of doctors’ had previously visited care homes throughout the island to review residents’ medication.

During those visits, they reportedly explained the TEP form and asked whether they would give their consent to certain treatment conditions as outlined in the form.

Malcolm was among the residents who had been visited by the doctors and had agreed to be made the subject of a TEP, a decision Lee says eventually led to the ambulance refusing to transport him for treatment.

However, Lee says that his brother insisted in the aftermath of the incident that he had agreed for treatment to be withheld in certain scenarios related to ‘end of life matters’ but still wanted to receive treatment if it could prolong his life.

Lee thinks families should be involved in decisions regarding TEP’s to avoid confusion, especially if they involve patients like Malcolm who have been diagnosed with conditions that could affect their brain function.

Literature produced by NHS Somerset’s Clinical Commissioning Group in 2020 says TEPs are created to record decisions that patients, their families, carers and health care teams have made regarding the treatments that would be ‘best for [individuals] in the future of [their] care.’

Lee added: ‘If you say to somebody, “do you want to have further treatment that could cause brain damage”, the answer is probably no. But that doesn't mean that by saying yes or no to that, that you're then agreeing to not be treated for anything else - especially if it’s treatable.

‘The system is flawed already, and it needs to have safeguards and checks on it.’

While Manx Care says it cannot comment on individual cases, it has emphasised that the TEP’s ensure that there are no wasted trips to the hospital, while saying that it gives ambulance crews ‘valuable information’.

A consultant paramedic within Manx Care, Lee Derbyshire, said: ‘Previously, ambulance crews have had to make difficult decisions with limited information available, often resulting in the only option being to transport patients to hospital, despite them being unlikely to benefit from hospital treatment.

‘TEP’s allow ambulance crews to access key clinical information about what treatments are likely to be appropriate, and also whether a patient has expressed any preferences or wishes in relation to their care.

‘Since the introduction of TEP’s, we have many examples of patients for whom we have been able prevent hospital admissions, supporting the patient’s wishes around the treatments and care they receive.’

Manx Care geriatrician Duncan Gerry added that the initial filling out of the forms is only done by the most senior person available, and never done by a junior doctor.