PRESENT: Jenny Rathbone MS (Chair)
IN ATTENDANCE: Sioned Williams MS, Joyce Watson MS, Rhys Hughes – Office of Rhun ap Iorwerth, Alison Scouller - Socialist Health Association Cymru, Dr Amy Marshall – FTWW, Andrew McMullan – BPAS, Debbie Shaffer – FTWW, Emma Williams-Tully – Campaigner, Gail Pettifor-Jones – Betsi Cadwaladr UHB, Dr Julie Cornish – Cardiff and Vale UHB, Pauline Brelsford - Abortion Rights Cardiff, Vivienne Rose – BPAS Cardiff, Lucy Grieve - BPAS
APOLOGIES: Sarah Murphy MS, Delyth Jewell MS, Llyr Gruffydd MS, Rhun ap Iorwerth MS, John Griffths MS, Dr Jane Dickson – FSRH, Angela Gorman MBE – Abortion Rights Cardiff
1. Welcome, minutes, MATTERS ARISING
Minutes: No one in the meeting was present at the CPG held 15th December 2022. These still need to be accepted and will be added to the agenda for the next meeting.
2. incontinence and the impact of childbirth injury
Dr Julie Cornish – Consultant Colorectal Surgeon, Senior Lecturer, and Pelvic Health Lead for Cardiff and Vale UHB
· States that common consequences of childbirth injury include urinary incontinence, anal incontinence, pelvic organ prolapse, sexual dysfunction, and pelvic pain. There is also an over 90% incidence of perineal trauma among first time mothers. Dr Cornish emphasises that although these are common, it does not mean that they are normal.
· Childbirth injury has an impact on “daily activities, psychological wellbeing, sexual function, and overall quality of life”, as well as being expensive to both patients (at a cost of £178 million per year) and the NHS (at a cost of £233 million per year).
· Delays in pathways, as well as a postcode lottery of services and medical bias are the main reasons as to why so many women are suffering this. There is ongoing work in Wales to rectify this, in the form of a Task and Finish Group, a Pelvic Health Implementation Group, and the development of streamlined and integrated care pathways and health hubs.
· NHS Wales were the first to introduce a bowel ‘pacemaker’ called Sacral Neuromodulation which allows you to have control over your bowel movements. Work to expand access to this is underway.
3. Pelvic floor health
Laura Price – Physiotherapist for Hywel Dda UHB
· Notes that 75% of women do not seek care for their incontinence and that reports show it to significantly reduce quality of life in women irrespective of severity.
· Speaks about consequences of pelvic floor dysfunction, with sufferers 26% more likely to fall and 34% more likely to sustain fractures as well as one third of women viewing it as a “substantial exercise barrier”.
· States that most causes of incontinence are modifiable and that active treatment should almost always be considered. Physiotherapy treatment options include: individualised pelvic floor rehab programme, lifestyle and behavioural interventions, biopsychosocial approach to pain and symptoms management, and biofeedback/NMES/electrotherapy.
4. Patient experiences
Dr Amy Marshall – Lead Volunteer for FTWW
· Speaks about journey through NHS services whilst suffering from incontinence. Her problems did not stem from pregnancy or childbirth, instead it was back when she was a teenager when she was told by a GP that it was normal.
· Talks about personal embarrassment and medical bias as a barrier to seeking further healthcare intervention. Was finally referred when she was 30 with stress incontinence, where she was assessed and told she had severe urinary incontinence and was recommended surgery. However, when they found out that she had not had any children, the doctors told her that they would not provide surgery until her “family was complete”. She was then given medicine which worked for some time.
· Referred to a tertiary centre in London for treatment when she was 32 where they recognised dysfunction of the whole gastro-intestinal tract that needed to be investigated. Her life changed when she was offered a trans-anal integration which gave her the capacity to control her own bowels.
· Notes personal financial burden – was never offered incontinence pads on the NHS but this was something she used daily for decades.
· Speaks about how much she had to advocate for herself and would never have had a chance had she not known services that were available through her occupation. Discusses need for local services and an end to a postcode lottery of care in Wales.
5. Discussion of issues raised by speakers
Discussion focused heavily on how to end the postcode lottery of service provision in Wales, as well as the importance of the further training required for clinicians across the medical spectrum. Points were also raised about the need for greater awareness around the issue of incontinence amongst the public, male and female, given its high prevalence.
Postcode lottery of services:
· Discussion focused largely on the lack of service provision outside of Cardiff, but also about the gap within all areas of the NHS when it comes to obs&gyn care and colorectal care. Points raised about how this could be something tackled by more streamlined pathways to bridge the gap between these services.
· Discussion around recent improvements to menopause care across Wales and whether we can use similar tactics to raise awareness and ensure that we are advocating for something which is likely to affect every woman at some point during their life.
Need for further training:
· Clinicians already have the skills across Wales but it is how patients can be identified faster and given the help that they need which is the hard part. Discussion of the importance of “a single point of referral and a clean, streamlined pathway”.
· Confusion amongst some clinicians about incontinence, with one patient stating that their severe leakage was put down to endometriosis and there wasn’t much that could be done about that.
Brining awareness to the issue:
· A point was raised about awareness of the issue in France being greater, with women getting three physiotherapy appointments after childbirth.
· Reinforcing that incontinence doesn’t just occur due to childbirth and the need for that message to be shared widely.
· Greater awareness needed on the issue amongst clinicians.
6. AOB
Next meeting: TBA