Covid “an excuse” to end chronic swelling treatment

Wednesday 16 September 2020

A former cancer sufferer has accused Jersey Hospice of using “covid as an excuse” to wind down a vital service helping people suffering from a little known illness that causes parts of the body to swell up.

Gordon Richard, Former Treasurer and Chair of Lymphoedema Jersey, has lived with lymphoedema since an operation to remove 29 lymph nodes in 2004 left him with severe swelling in his left leg.

The condition involves parts of the body swelling due to a build-up of lymph fluid. This is because the body’s lymphatic system, which usually drains the fluid away, either isn’t working properly or has been damaged by cancer or subsequent treatment.

Around 200 people in Jersey are affected.

Speaking to Express, Mr Richard said he had been receiving regular treatment for the condition from Jersey Hospice up until three years ago, when suddenly his therapist’s assistant was moved to a different role.  

Alongside this, he said that regular treatment to pump and massage his leg was cut and reduced to getting a hosiery measurement every six months, and he was considered able to 'self-maintain' – “In other words, I wasn’t going to get any treatment."

He says he questioned "why that should suddenly be the case, when for all the previous years it hadn’t been the case."

Pictured: Mr Richard said that he had regular treatment with Hospice up until three years ago. 

However, a recent letter this year told him that Hospice was taking this further, with treatment suspended during lockdown and no longer supplying hosieries either, leaving sufferers to pay for them on their own.

Explaining how the decision had him “riled up”, Mr Richard said that “I’m in a reasonable state other than the lymphoedema leg, but there are elderly ladies who I am now sure are left high and dry – from people affording their hosiery free, they’re going to have to pay for it.”

He said that this was then followed by another even more recent letter where he was told the therapist had resigned from their position, leaving him feeling like these were “accounting decisions” from higher up to wind down the service.

However, Mr Richard was keen to stress that he did not think it the fault of the therapist at Hospice themselves, who he passionately praised as “magnificent”, and who was “trying to cope on their own with all the pressure of the patients” without the help of an assistant. 

He also criticised the Health Department’s past attitude towards the condition, saying that when around six years ago Lymphoedema Jersey approached the Health Minister and asked “why hosiery isn’t on prescription in Jersey”, they responded with “we’ve got a different system to the UK” and that “it’s an expense.” Express has contacted the Government for comment on this.

He added that he was worried about the fact that outside of private care, there would be only one charity left to care for sufferers if Hospice services stopped - the Lymphoedema Jersey Clinic - which has previously cared for non-cancer-related Lymphoedema patients.

Therapist at Lymphoedema Jersey, Helena Parris, confirmed that there are plans that some of the cancer patients would be transferred over to the charity’s clinic in the coming months.

She said that considering their clinic was only open one day a week, the charity is likely to “struggle” to adjust. 

Pictured: Mr Richard said when he approached the Health Department about prescription hosieries, they said it would be too much of an "expense." 

Jersey Hospice’s Director of Palliative Care Services, Gail Caddell, said after a request for comment from Express: “At Jersey Hospice Care we recognise lymphoedema therapy as an essential service for patients with need, regardless of their diagnosis or condition.  

“Due to government restrictions in place as a result of covid-19, we are not currently in a position to offer this service to patients which is part of our wider day and outpatient services that are suspended at this time.

“We have been in touch with each of our patients to discuss their individual needs and signpost them to alternative services available during this challenging time. 

“As we review the resumption of our services at Hospice, we will be discussing with Health and Community Services how lymphoedema services can best be provided within the community for everyone who needs this vital care.”