The aim of the 1 in 4 – Putting Miscarriage on the Agenda project was to do just that, to highlight the gaps in service and improve future provision for women and their partners who experience a miscarriage. Women who had experience in this area were pertinent in shaping the agenda and influencing change through their powerful and emotional experiences.
Initially, effort was put into:
- Addressing the lack of information given to women at this traumatic time;
- The collation of support groups and the dissemination to of this information to HSC Trusts, GPs and onto NI Direct to help those who wanted peer support;
- Promoting well trained staff and the wording within bereavement pathways and consent forms to ensure communication was appropriate and understood by all.
After which, more strategic work was adopted to influence pathways, policy and commissioning and this work is still in progress.
At what level did the PPI take place?
- One to one;
- Service development/delivery;
PPI helped the project to:
- Improve efficiency of a service;
- Improve quality;
- Improve safety;
- Inform commissioning.
The Patient and Client Council (PCC) were approached by a number of women who were not satisfied with the services they received when they had a miscarriage. The PCC undertook a wider investigation into people’s experiences across Northern Ireland. From this, a Pregnancy Loss Steering Group was established to put miscarriage on the agenda and influence future provision.
Aim of involvement
Women who had experienced a miscarriage were asked to sit on a Pregnancy Loss Steering Group (PLSG) to shape work and set the agenda items in an effort to improve future provision. Their involvement was critical from the start of the process. They highlighted areas for change and improvement and worked alongside professionals to influence change.
- Reluctance of professionals to have service users involved early in the process;
- Language used by clinicians was not always appropriate for service users;
- Due to competing priorities, there was a sense that unless it was on the commissioning plan it would not be considered;
- There was a real need to prove your case to get miscarriage on the agenda, evidence was essential.
Outcomes due to involvement
The PSLG was consulted over the development of a bereavement pathway that is currently being implemented by the five HSC trusts. The PSLG:
- helped write and design a new regional early pregnancy loss information leaflet;
- played a key role in rewording a histopathology test regional form to address inconsistencies;
- helped to develop resources to raise awareness;
- inputted into the development of a new pathway for histopathology tests to ensure consistency across all HSC trusts.
Outcomes for stakeholders:
- The PCC and PSLG worked with the UK based Miscarriage Association on early pregnancy loss literature to highlight the charity’s services available in Northern Ireland;
- A ‘1 in 4 – Putting miscarriage on the agenda’ event to share good practice, highlight any gaps in service provision and improve support mechanisms;
- A new support group for people affected by early pregnancy loss.
- GP training session held which also contributed to development of six short educational videos;
- Information sessions for midwives as part of the Clinical Education Centre’s early pregnancy bereavement awareness training;
- Arrangements are now in place for the Miscarriage Association to take an active further role in further HSC early pregnancy awareness bereavement training through the Clinical Education Centre;
- Following the review of perinatal mental health services the Regulation and Quality Improvement Authority (RQIA) recommended that each HSC Trust has specialist perinatal mental health support services with psychological input. The PCC and members of the PLSG fed into this review.
- Miscarriage was identified in the Northern Ireland Health and Social Care Draft Commissioning Plan for 2016/17 as a specific issue;
- The Maternity Strategy Implementation Group (MSIG) has also agreed to work on this issue and it was included in the Action Plan for 2016/17.
For further information, contact:
Jackie McNeill (Involvement Services Programme Manager, Patient and Client Council)
Tel: 028 95362548
Web: Recurrent miscarriage position statement