‘Why won’t you help my dying wife?’ - Man’s 18-month fight for care funding

PUBLISHED: 08:58 05 December 2018 | UPDATED: 11:08 05 December 2018

Robert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie Honeywood

Robert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie Honeywood

Jamie Honeywood

A Norfolk woman was not dying quick enough to access NHS funding for her care, her husband has claimed.

Robert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie HoneywoodRobert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie Honeywood

Sylvia May, 73, has a number of conditions including fibrosing alveolitis, a lung condition from which 50pc of people die within five years.

Despite having lived with the illness for 11 years, Mrs May also has type 2 diabetes, severe rheumatoid arthritis and chronic kidney disease.

And in June last year her husband Robert, 77, started the process of applying for NHS Continuing Healthcare (CHC) funding as caring for her became too much.

CHC is a complex package of health and social care funded solely by the NHS, and is often used for those with long-term complex healthcare needs.

Robert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie HoneywoodRobert May, whose wife Sylvia is very ill but struggling to access NHS funding. PHOTO: Jamie Honeywood

But despite not being able to walk, being catheterised, and often not being able to breathe Mrs May was not assessed as severe enough to access help.

A further blow was dealt when Mr May was told because his wife was not expected to die within two weeks, she could not access funds that way either.

However commissioners said Mrs May had been granted funding for some nursing care and they would meet with Mr May to discuss his concerns.

Mr May, of Hawkins Close, Great Yarmouth, said: “Out of 250,000 people about 40 will have these combined illnesses and that figure is questionable. Dr Moghaddas, Sylvia’s doctor, informed me he has never had a patient with fibrosing alveolitis never mind the other illnesses.

“If Sylvia was not on morphine she would be in agony all the time. Only a specialist who has dealt with a number of cases - and I don’t mean one or two - could possibly give a prognosis for Sylvia.”

Mr May said national guidelines were unclear and the rules would have allowed his wife to access more support and covered more of the £950-a-week bill for her care home.

It was only last month, when Mrs May deteriorated and it looked like she might not make it to Christmas, that funding was unblocked.

But by that point Mr May had fought for 18 months and he fears what will happen if her condition improves.

Mr May said: “It has affected me, I’m really tired now. But it’s for every body going through this, not just me.”

CHC will be discussed on Thursday by Norfolk County Council’s Health Overview and Scrutiny Committee (HOSC).

Documents released before the meeting said commissioners in Norfolk and Waveney needed to cut £3.7m from their CHC budget this year and as of October more savings than expected had been reached.

And Mr May said he felt because guidelines were unclear it presented an opportunity to save money.

The HOSC report said in the case of fast-tracked services for the terminally ill terms were “open to interpretation” so “a patient could be discharged to a nursing home on a social care or self-funded basis” instead.

And figures showed “significantly fewer people per 50,000 population are assessed as eligible for fast track continuing healthcare in Norfolk than is the case in England as a whole”.

Rebecca Hulme, chief nurse with Great Yarmouth and Waveney Clinical Commissioning Group, said: “Determining whether an individual has a primary health need involves looking at the totality of the relevant needs.

“Individuals applying for NHS continuing healthcare are assessed by an experienced nurse and social care worker using a national framework which takes into account criteria such as mobility, communication and eating and drinking.

“The evaluation also considers the nature, intensity, complexity and unpredictability of need, and once complete the assessment is reviewed by a multi-disciplinary team to ensure consistency of decision making.

“Whilst the outcome of the assessment was that Mrs May was not eligible for continuing healthcare, she is receiving funded nursing care. The CCG maintain contact with Mrs May and she is regularly reassessed to take into account any change in presentation or need.

“We have offered to meet with Mr May which he has previously declined. We would ask him to get in touch with us if he would like to discuss further.”

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