Home » Stage IV endometriosis

There is no dedicated endometriosis centre in Northern Ireland or even a fast track referral pathway. Since 2013, the Patient and Client Council has been supporting women with severe (Stage IV) endometriosis to engage with decision makers with a view to improving diagnosis, safety and quality of life for patients.

At what level did the PPI take place?

  • Co-design;
  • Co-production;
  • Informing.

PPI helped the project to:

  • Improve safety;
  • Inform commissioning;
  • Increase ownership.

Background

The Patient and Client Council has a statutory duty to promote the involvement of patients, clients, carers and the public in the design, planning, commissioning and delivery of health and social care.

Since 2012, the PCC has consistently supported patients to advocate on behalf of women affected by Stage IV endometriosis at HSCB meetings and at commissioner level. The PCC has also supported women to present personal testimonials on two occasions at public meetings of the Health and Social Care Board. In November 2015, the PCC hosted two group discussions between officials from the Public Health Agency, HSCB and patients.

In January 2014, the PCC hosted a regional symposium in partnership with the Pain Alliance Northern Ireland (PANI), which was attended by the Minister for Health, decision makers, patients and professionals. The purpose of the symposium was to raise awareness of the condition, the need for a regional endometriosis centre and a framework to care for and treat patients.

Through our discussions, we found that many women with Stage IV endometriosis are misdiagnosed and mismanaged for several years. People told us this has a major impact on their health, can lead to infertility and can have a detrimental impact on their academic and work life. Currently women with Stage IV endometriosis are referred to a clinic in Belfast, although it operates on an ad hoc basis, with a considerable degree of good will within the confines of the existing work schedules of the consultant staff involved. Demand for this service has increased in recent years due to growing numbers of referrals from within and outside Belfast. Approximately 35-40% of the referrals suffer from severe endometriosis and the majority of the new patients are listed for surgery. Access to operating theatre time is limited and waiting times for surgery are now up to 18 months.

In June 2013, the Health Committee recommended an integrated endometriosis centre to the Northern Ireland Assembly based on a single site and offering the full spectrum of medical and surgical treatments, alongside alternative therapies and counseling.

The recommendations included dedicated staff, including a specialist consultant gynaecologist, a pain management specialist, psychologist, colorectal surgeon, urologist, specialist nursing support, as well as research support. In September 2014, Belfast HSC Trust submitted a business case via the Women’s Services Co Directorate.

Because of the personal nature of this very debilitating condition, there was a real need for a sensitive and supportive involvement process.

Method(s) of Involvement

Challenges

  • Endometriosis affects 1 in 4 women of childbearing age, yet it is not widely known or understood by healthcare professionals, nor is it spoken about much in public;
  • Because of the personal nature of the condition, it is difficult for women to speak about their experiences. There was a real need to provide a sensitive and supportive involvement environment;
  • Women with Stage IV endometriosis are often too physically ill to attend meetings, so you need sufficient numbers of women to ensure continuity of dialogue.

Outcomes due to involvement.

While there has been a significant effort over the past three years on the part of patients, the PCC and PANI to increase awareness of the condition and the needs of patients, there has been no betterment in terms of service delivery in that time. As a direct outcome of our symposium in 2014, Altnagelvin Area Hospital in Derry/Londonderry applied for accreditation in 2016/17 as a local centre for the diagnosis of endometriosis. This will not, however, be a regional centre.

Timeframe

Ongoing.

Further Information

For further information, contact:
Louise Skelly, Head of Operations, Patient and Client Council
Email: louise.skelly@hscni.net
Tel: 02895 363995
Web: Endometriosis position statement