MORE than three years ago, the Irish Cancer Society wrote to the HSE to urge the organisation not to cut post-surgery entitlements for breast cancer patients.
The charity was growing increasingly concerned by reports of the HSE’s plans to “standardise” patients’ access to post-mastectomy products nationwide.
In 2014, the HSE was in the initial stages of developing a plan to tackle what it described as “inconsistent” entitlements for breast cancer patients who had undergone mastectomies. In June of this year, the HSE began to roll-out this new policy in order to address these differences.
However, this policy was later delayed due to considerable objection from both the public and the Minister for Health.
Newly released internal documents show that as early as May 2014, the Irish Cancer Society warned the HSE that changes to its policy on post-operative entitlements would be detrimental to patients.
Under the Freedom of Information Act, the Evening Echo requested all documents relating to the HSE’s development of a new standardised policy for breast cancer patients. 22 documents spanning three years were issued. In a letter dated May 2014, the Irish Cancer Society warned the HSE that any changes to the current policy would be “to the detriment of cancer patients with medical cards.”
“It is the understanding of the Irish Cancer Society that the HSE has actively sought to change the standing policy with regard to bras and prostheses to the detriment of cancer patients with medical cards,” the group wrote. “While the Irish Cancer Society welcomes any review of HSE policies, we insist that this must not dilute the high standards of cancer care which have been established in Ireland.
“In this regard, we are concerned at reports that the HSE attempted to introduce a new policy of one bra and one prosthesis every two years and would urge you, and the members of the group, not to pursue such an unsympathetic cut.”
The letter continued: “Upon the introduction of the HSE, and because of a lack of a uniform policy among health boards, organisations such as the society fought for a new entitlement that covered all breast cancer patients.
“Following the initial post-surgery provision of two bras and one prosthesis, the entitlement for women has been two bras per annum and one prosthesis every two years, two for women who have had a double mastectomy, plus swimwear and a swimming prosthesis. Dignity is vital to a breast cancer patient both during treatment and in recovery.
“If such a reported cut was to be introduced, it would have a profound impact on the personal lives of the patients.”
Many patients contact the Cancer Society to ‘seek support and increasingly this support is financial’, it continued.
“The first three months of 2014 saw a 12% rise in the number of applications to our financial aid scheme compared with 2013. This financial aid goes to cancer patients who are struggling to make ends meet. Some want to heat their home. Others want to make sure there is food on the table. We are concerned that such a cut would put more pressure, financially and personally, on cancer patients and survivors. Bras and prostheses for women who have had mastectomies are expensive and we believe that such a negative policy change is unnecessary.”
In response, the HSE wrote back to the charity to advise that a working group had been convened to work on the changes, which included representatives from the National Cancer Control Programme, the Irish Breast Cancer Nurses Association and the Irish Cancer Society Nursing itself.
When the HSE began rolling out its now-defunct policy, it said that patients in some areas around the country had limited or no services, whilst others had unlimited access.
“The policies were introduced to ensure standard guidelines and equal and consistent access based on a patients’ need and not their geographic location.”
This new policy also now extended access on an ongoing basis to all women for post-mastectomy products as previously these products were only accessible to medical card holders.
Currently, women in the South, including women in Cork, who go through surgery for breast cancer receive a prosthesis every two years through the HSE. They also receive two specialised post-surgery bras each year.
Costs for prosthesis can vary as each woman’s needs are different. According to specialists, they average at around €165 but sometimes can cost upwards of €200. Specialised bras, designed to hold a prosthesis as well being designed specifically to suit women’s post-surgery needs, range between €40 to upwards of €70.
However, other women around the country do receive different entitlements to women in Cork; some receive less, some receive more.
From June 1 this year, the policy was to be changed so that every woman nationally would instead receive a voucher to the value of €135 for a single mastectomy, which equalled to €68.50 towards the costs of a prosthesis and two bras costing €33.50 each.
However, these changes were met with uproar nationally as they effectively cut entitlements for a large number of patients, including women in Cork. In July, Health Minister Simon Harris said that he was “extraordinarily angry” at how the situation was handled.
“I have communicated that in the frankest and most blunt terms to the HSE and Director General. Patients who have come through such difficult times do not need to have additional worries,” he said.
“Let me be very clear as Minister for Health and on behalf of Government there will be no cuts to any breast cancer patients.”
The proposed policy changes were eventually shelved in August, and any plans to standardise care were returned to the drawing board.
It is understood that a new policy is to be released in the coming weeks.
Following the HSE’s policy change in the summer, a lot of patients thought that the service has already seised, according to Kate Hynes of Bellisima, a provider of mastectomy bras based on Victoria Cross Road.
“Every day still, we have one or two women who say ‘Oh God, I thought ye were gone’ or ‘I thought this was stopped and I didn’t know where to go.’”
Ms Hynes recently travelled to Leinster House to meet with representatives from the Department of Health and the HSE to make the case for the importance of the products she supplies breast cancer survivors with. She said: “I spoke to them about the importance of the service we provide, why it is so important and the feedback we get from our clients and about the impact the withdrawal from the service would have on the daily lives of our clients.”
Ms Hynes also travelled with Fine Gael Senator Colm Burke, who arranged the meeting, and Anne Roche of Roche’s Cancer Care in Dublin.
She said: “The meeting went well but I suppose we won’t know the outcome of it until the HSE actually reverse any changes that they are going to make. The HSE very clearly said it was not about cost-cutting, it’s to bring clarity and equity across the country but as of yet, we don’t know what that new policy will be.
“The rates of recovery, the rates of survival for breast cancer are increasing because everybody is working towards that. It seems really, really unfair now that women will be living well, living longer and yet they could be penalised on their appearance. For some people that has a really, really detrimental effect.”
Ms Hynes said that changes could ‘remove all privacy’ from the illness.
“Some women that we would have spoken to say that if they didn’t have their prosthetic, they would never leave the house. We want all of society to be active members and that’s not going to be the case for women if they feel that they look wrong, that they’re unbalanced.
“We’re a first world country, we’re aiming to improve services. It’s amazing that women are living longer, it’s fantastic. It’s a testimony to the work that’s being done, fighting cancer but we need not penalise them for it. The products are expensive because they are medical devices. It’s not like an ordinary item that you can go to any shop and buy. You need specialist fitters, these are medical devices. It’s like asking someone to pay for a false limb or a false eye.”
Plans to change post-surgery entitlements for breast cancer patients caused outrage before being shelved earlier this year. FOI documents seen by reporter Jess Casey reveal that the HSE was warned about the impact back in 2014, three years before the change was due.