Breast Cancer survivors spoke to Joe Duffy on Liveline about proposals to reduce entitlements to post-mastectomy underwear; measures which have now been reversed. Listen back above.
Changes to the provision of post-mastecomy bras, prostheses and swimwear to breast cancer survivors, as an attempt to standardise services led to an outpouring on Liveline of personal stories, shock and outrage on the part of the women affected.
The cuts to entitlement have now been reversed, and you can read more from RTÉ News here.
As the story unfolded across two days, Joe Duffy heard from service providers and women across the country about the urgent need for these specially designed bras and the work of professional suppliers. Joe also read aloud from statements issued by the HSE and the Minister for Health, Stephen Donnelly.
Women who have one or both breasts removed and don't opt for reconstructive surgery are entitled to apply for a prosthesis and two specially constructed bras to hold the prosthesis in place; as well in some areas of the country, a swimsuit with a waterproof prosthesis.
The new proposals would have brought everyone down to a basic entitlement of just one bra per year and one prosthesis, with a new cap of €60 on the cost of the bra. Josie Flynn, a breast cancer survivor from Greystones told Joe she thinks this is simply unworkable:
"Am I supposed to go around with one flat side while I wash the one I have?"
Entitlements are spread unevenly across the country and the new measures would have meant losses for some, rather than bringing everyone up to the higher standard of entitlement. Women in Cork, for example, a county with over 1000 kilometres of coastline, are not entitled to a specialist mastectomy swimsuit; as Joe heard from Eithne Hickey, who provides a bra-fitting service in Cork:
"In Cork they've never been allowed a swimsuit. I would love to see a bit of equity coming in there, the Cork people being allowed that. As all those other women pointed out, swimming is so important after surgery."
Many women calling in to Liveline spoke about the role of swimming in avoiding lymphoedema; a problem that can occur after cancer surgery when lymph nodes are removed. One anonymous emailer touched on this and wrote about the link between her recovery and her ability to live a normal life after this life-changing surgery:
"For us, these are not just pieces of clothing – they are a medical necessity in order to prevent lymphoedema. Cuts to cancer care survivors is not the answer to our economic difficulties. I continue to rear my children and I’ve returned to work part-time as a result of cancer care. All any person wants is to be given the chance to continue contributing."
The recent measures (now reversed) also proposed that the bra fitting would take place hospital. The suggestion was met with dismay by women for three reasons, as they told Joe. Firstly, the women were worried about taking breast cancer nurses away from their clinical work; secondly, they say the professional fitters provide an essential service in filling out the forms on behalf of the women and thirdly, they provide a personal service which could not be matched in hospital. Caroline Davis of Caroline’s Breast Care in County Carlow says she thinks that women want to keep things as they are:
"People could come to me. Now they are trying to get them to go back to the hospital and take up the time of a Breast Care nurse, who doesn’t need to be doing the fitting or have the time to do the fitting."
Fresh paperwork has to be submitted every year and this onerous task is usually borne by the professional bra-fitting service, Caroline says:
"I have to apply to the HSE for each of the ladies and wait for approval. And that’s fine, because I’m doing it. If they had to go to their GP, you know how busy they are. So they feel like they are begging for this. I suppose they feel a bit exposed going in each time, looking for these letters."
Several women who called in told Joe about their experiences with Alison McCabe, one of the mastectomy bra suppliers who also spoke on the show. Evelyn Foley had a double mastectomy in 2009 at the age of 49; as she tells Joe:
"When your breasts are gone, you lose your confidence, Joe. I was 49, divorced two children. I didn’t even want to go out until I met Alison McCabe."
Evelyn says that buying a post-operative bra is a completely different experience to buying underwear before you've had breast cancer:
"We can’t go into a department store and pick up a cheap bra or a cheap swimsuit. It doesn’t work like that. One bra is not enough."
Another caller, Yvonne also had a great experience with Alison. She says her new body shape has affected her self-image and that Alison has helped her and others to come to terms with the new reality:
"We look on the outside to the world as if we are getting on with it, but when you look in the mirror, all you want to do is cry. She made you get over that. There was only four people seeing my scar, one was my husband, two was the doctors and Alison was the fourth. That was how much we trusted her."
Pauline Fulham got cancer at the age of 48. She didn’t have to have a breast removed, but she says she is in treatment and regularly meets with women who have had mastectomies:
"I see women every three weeks when I go to Vincent’s and they’re coming in and they have everything stripped from them and this is just a small thing that the government does to help them on their journey."
Pauline's mother also had breast cancer at the age of 48 and got her bras for 40 years until her death in 2022. Pauline says her mother found the physical changes very hard; but she says she would have been lost without the regular supply of specialist bras:
"She would have never looked at herself in a mirror - these bras gave her a little bit of dignity."
On the 21st of February, the Health Minister released a statement regarding the proposed cuts and Joe read from the statement on Liveline:
"He has today asked the HSE 'to amend the procedures to ensure that no woman currently availing of the scheme or accessing it in the future is at any financial loss as a result of these changes’."
If you’ve been affected by any of the issues that came up here, you can find helpline information here
You can listen back to the full segments on the mastectomy bra measures across the 20th and 21st of February on Liveline, as well as other topics featured on the show here