WOMEN LIVING WITH severe complications as a result of surgeries using vaginal mesh implants have said there is still no clear aftercare pathway for them more than a year on from recommendations made by the Chief Medical Officer.
In November last year Minister for Health Simon Harris confirmed the suspension of all surgeries involving these devices until the HSE implements the 19 recommendations, which include the provision of aftercare for women living with complications from these procedures.
Vaginal mesh devices are used in operations to treat stress urinary incontinence (SUI) and pelvic organ prolapse (POP); two conditions women can suffer from after natural childbirth or in their later years.
Lesley-Anne Stephens, was 36 when she had a procedure to address urinary stress incontinence. Now at 40 she has to use a walking stick for support and says she is in constant pain.
She had two partial removal surgeries but she was still experiencing pain afterwards so at the end of last year she went to England for a full removal procedure. These devices are designed to be permanent and they embed themselves in the natural tissue.
It is not clear in Stephens’ case whether all of her mesh, which is made from a type of plastic, has been removed. The specialist in England also had to perform a urethroplasty on her and a full vaginal reconstruction.
Since this latest surgery, Stephens, who lives in Co Carlow, said she has still been experiencing “sharp, shooting pain” in her groin and stomach.
“I get very little sleep at night. I have recurrent internal infections which make me sweat profusely, bleed a lot and the pain can get so bad it makes me physically sick,” she told TheJournal.ie.
“The stabbing pain can often feel like I’m sitting on a barbed wire fence. Depending how far I have to walk, I use my walking stick, I have horrendous nerve pain in my leg and on several occasions my leg has lost power, which has lead to me falling and ending up in A&E.”
Aside from her GP, who has provided help with pain management, Stephens said she has not received any other medical care in Ireland since her recent surgery.
“I take heavy medication for pain and rely heavily on them to get me through the day. Unfortunately they don’t take my pain away but alleviate it a little so I can function as best I can.”
Stephens is one of a number of women impacted by complications who has been campaigning to highlight the issue. The Mesh Survivors Ireland group has staged a number of protests at Leinster House to demand the State provide a structured pathway of specialist care for severe complications.
It is unclear how many women have suffered complications after these surgeries in Ireland. The HSE is working to find that out.
The support group currently has 500 members and the Health Products Regulatory Authority (HPRA) has received 135 reports in relation to these devices. The CMO’s report last year found surgeons had not notified the health watchdog about issues with implants.
At that stage the HPRA had received 76 reports in total about the devices but all of these were from members of the public.
A representative group for the surgeons has previously said its members likely did not submit reports as the rate of serious complications they were seeing among their patients was not higher than the expected rate deduced from research studies.
‘Near future’
Stephens has written this year to both the Minister for Health Simon Harris and to the coordinator of the aftercare pathway that is being developed by the HSE. She was told by the coordinator that a definitive date for this aftercare service pathway could not be provided, though she said it was “in the near future”.
She also received a reply from the minister’s office in April, but has not had any updates either from the HSE or the department since then.
“At the moment it’s a pathway to no where,” she said.
TheJournal.ie asked the HSE for an update on progress in this area, in particular in relation to aftercare for women with complications.
A spokesperson directed us to the HSE’s implementation plan which noted just two of the recommendations were fully completed by April this year.
At least ten action points within the recommendations had been done. A further 19 actions were due to be completed by June, but the HSE did not provide information on whether this target had been achieved.
Minister Harris has previously said that the suspension of these procedures will be lifted when the CMO’s recommendations have been implemented.
In his report last year, CMO Tony Holohan noted complications relating to mesh devices can be “severe and life-altering” in a minority of women.
“Mesh complications can be extremely difficult to treat in some patients because of the unique characteristics of mesh devices, which are designed to be permanently implanted,” he said.
He recommended the HSE should identify a central point of contact for women who may require assistance in relation to treatment options.
He also said the HSE should put in place a contact point and referral pathway for women with no treating clinician or with severe complications at every hospital group as well as a mechanism to communicate this to women and clinicians.
According to the implementation plan, both of these recommendations are completed.
However work on the establishment of specialist referral centres is still ongoing.
“Procurement of the necessary equipment for the provision of aftercare is underway and in line with EU procurement,” a HSE spokesperson told TheJournal.ie. “The multidisciplinary teams will be centred in two places; one in Dublin and one in Cork.”
The HSE is also still working to establish the numbers of women requiring and likely to require specialist multidisciplinary services.
‘Nothing has happened’
Dr Barry O’Reilly, a consultant obstetrician-gynaecologist based at Cork University Hospital said patients who are seeking treatment for severe incontinence have now also been left in limbo.
He pointed out that the UK’s health watchdog Nice recently recommended mesh procedures be offered again as a second line option, after physiotherapy has failed.
“I’m not sure why the pause is still in place,” he told TheJournal.ie. “Everyone was waiting for the Nice guidelines and the conclusion was that slings [the device used to treat incontinence] could be used.
“Everyone thought that was going to be it, that the minister and CMO would act on that. Nothing has happened and I’m not sure what we’re holding on for.”
O’Reilly said the establishment of specialised centres will take time and will require medical staff across multiple disciplines like urology, gynocology, physiotherapy and pain management.
“It’s an extensive team to put together. I have to say, I’ve been doing this type of surgery for 14 or 15 years here and there have been complications associated with mesh, as there are with every procedure.
Complications haven’t just suddenly arrived. When we talk about centres, it’s an unusual term because I’d prefer to think that surgeons who put mesh in or do any procedure should be able to manage potential complications.
O’Reilly said he already does procedures to correct complications.
He said that since high profile legal cases in other countries and “a drive on social media”, there are more women who are pushing for complete removal and some are travelling outside of Ireland to get these surgeries.
“I’d like to think my patients would come back to me with a complication. In my view the advice to go to the UK for mesh removal has been misguided.
It’s an enormous procedure. I have seen a couple of patients today who had various elements of non-descript pain and I have been examining them under anesthetic. They are keen to have their mesh removed, but I have to say it is perfectly placed.
“This is why we need multi-disciplinary care. If they were to undergo this procedure, is it going to remove the pain or cause more? They will certainly be rendered incontinent again and for some the pain is worse afterwards.”
‘Breaking my heart’
Lesley-Anne Stephens said her life and that of her husband and children has “changed in every way” since she had a mesh sling implanted.
“We are missing out on what should be the best times of our lives together as a young family and as a couple. Intimacy between any couple is an internal part of any relationship, and for that to be taken away from you, is difficult to process and accept,” she said.
Her husband Darren said watching his wife’s deterioration “is breaking my heart”.
“Trying to find the right thing to say, to provide support when it’s needed the most can be regally difficult, when you don’t know if there is or will be help out there for her,” he said.
“It’s impacted on every aspect of her life, our relationship, along with her relationships with family and friends. It’s so hard, watching Lesley-Anne not being able to get a full nights sleep, not being able to walk properly, knowing that every thing she is trying to do and contribute is causing her pain and hurt, it’s hurts me deeply too.”
He said that as well as having to cover the cost of treatment in the UK and the associated travel, the family now also has to consider housing adaptations for the future.
“It’s disgraceful that families are left to figure out all of this without any assistance or support, especially when this was all done to them.”
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