POSTCODE LOTTERY FOR BREAST CANCER SURVIVORS

Women demand end to ‘unfair’ HSE post-mastectomy scheme with vastly different entitlements depending on where you live

THOUSANDS of breast cancer survivors are demanding that the HSE end its ‘discriminatory’ scheme for mastectomy products – which subjects women to a ‘postcode lottery’ system.

The details of an Irish Mail on Sunday survey of entitlements in each area of Ireland is revealed for the first time today, with the HSE telling this paper it could not provide an overall list centrally.

The executive had plans last year to introduce a standardised scheme but it was pulled at the last minute because Health Minister Simon Harris and his department had not been consulted.

The plans sparked uproar from affected women because, in some areas, the entitlements would have been lower than under the previous scheme.

The proposed scheme sought to give women a €135.50 voucher for a single mastectomy – to include a prosthesis to the value of €68.50 and two bras at €33.50 each.

However, a prosthesis costs between €150 and €200 – at least twice what the HSE had proposed to cover.

Nearly a year on, and a series of consultations later, a new policy has yet to be outlined by the HSE.

A nationwide survey undertaken by the MoS shows the vast disparity in entitlements – ranging from bras and wigs to prostheses and swimwear – for women who have had surgery.

The information is not held centrally by the HSE and, in some cases, it took months for the individual community health organiin sations (CHOs) to clarify what women are entitled to in their areas. Allowances differ most starkly across Dublin health districts – with women living in Dublin 4 and 6, for instance, entitled to nearly €100 more than women in other areas.

Anne Roche, of Roches hair replacement and breast care products in Kimmage in Dublin, told the MoS that the ‘unequal and convoluted scheme’ continues to cause undue upset to women and puts considerable pressure on businesses such as hers.

The HSE reimburses suppliers of such products but the difficulty for stockists is explaining to customers that not all women are entitled to the full range.

‘A lot of women come in because they have been told they are entitled to two bras and a prosthesis and in theory, they are. ‘But the reality is different… ‘It is extremely difficult to tell a woman that in fact she is not entitled to an item because of where she lives.

‘They don’t know the backdrop to this and they are also right in the eye of the storm,’ said Ms Roche.

‘We’ve had to say to women who have come in the hope of feeling and looking better after a mastectomy, “Sorry, you don’t qualify for this because you live in this area.”

‘It does sound like discrimination when you ask someone, “Where do you live?” I hate asking that question.

‘It puts us in a very awkward position when people are already an upset state. We don’t want to burden them with it, so we try to manage and end up taking a hit,’ she said.

‘We can’t send someone out feeling worse than when they came in.

‘The reality is that these services are going to disappear. We bend over backwards for our clients but at the same time we are not a charity.’

She described the differences in allowances for women across the Dublin health districts as ‘outrageous’.

‘Women in Dublin receive the smallest allowance in the country. Within Dublin, there’s an allowance for women in some areas but that does not cover two bras and a prosthesis.’

Ms Roche said that while there are some cheaper post-mastectomy products on the market ‘it would be like trying to fit a boulder into a bra’.

‘We have a standard. We have had women come into the store who have used a bag of bird seed or socks, to fill a bra after a mastectomy,’ she said.

A spokesperson for the Irish Cancer Society told the MoS that ‘for too long, cancer patients’ access to these products has been determined by a “postcode” lottery system’.

They stressed that the organisation has ‘long called for access for all cancer patients to post-mastectomy prostheses and bras, and wigs for all cancer patients suffering hair loss, based on need and not just those with a medical card’.

The society’s ‘Real Cost of Cancer’ report showed that managing the side effects of cancer treatment is a major issue that can be financially stressful for those dealing with the disease.

Valerie Murphy, a specialist in prostheses and support wear for breast cancer patients in Co. Limerick, told the MoS she had to ‘practically stalk Simon Harris in an attempt to rectify this situation’.

She eventually managed to set up a meeting after the revised proposal was suddenly put forward by the HSE last year.

That proposal had been awaited since at least 2008, Dáil records show.

After starting a petition that garnered more than 1,000 signatures within 24 hours, Ms Murphy and other suppliers travelled to Dublin.

Ms Roche was among a number of specialists in post-operative cancer wear who met with health officials. Mr Harris was unavailable.

Ms Murphy argued that if women don’t receive these products from a professional mastectomy fitter, they can suffer from other health consequences, including back pain, neck pain or shoulder drop.

A HSE spokesperson told the MoS it had carried out focus groups with patients and their feedback would be considered by an expert group.

‘We are unable to provide a timeline at present,’ added the spokesperson.

‘Sorry, you don’t qualify – you live in this area’ ‘We don’t want to upset them, so we take a hit’