In my last blog I talked about the parent stakeholder workshops we ran earlier in the year. These were absolutely crucial to us because they will underpin the development of the National Bereavement Care Pathway; clearly we want to make sure that it is family focused, and grounded in experience.
Many thanks again to those who were able to attend, and for those who have been in touch recently. We are so grateful that parents took the time to share their experiences; we continue to be inspired by how clearly and passionately the need for high quality and consistent bereavement care is articulated. A number of themes emerged which we’ve summarised as follows:
- Health professionals need to communicate clearly and honestly with parents at all times
- Information should be clear and accessible
- Parents should be provided with choices about their care
- Language and body language are important
- Staff should use plain language
- Staff need to communicate well with each other
Continuity and consistency in care
- Bereaved parents shouldn’t need to repeat themselves
- Continuity of carer is important
- Different approaches to care by members of staff can be confusing and distressing
- Ongoing bereavement care is important for many families
- Care in subsequent pregnancies needs to take account of previous experiences, and be responsive to bereaved parents’ individual needs
Partner and family involvement
- The whole family can be affected by the death of a baby, and this should be reflected in the care and information provided
- The involvement of partners, and their distinct needs, should be recognised, respected and supported
Whilst we can’t promise that every unit will get it right every time, we will make sure that as the pathway is developed it reflects these key themes.
Our next stage is to start taking detailed feedback from health professionals on what needs to be included in the National Bereavement Care Pathway (such as training and guidance material), and how to encourage its take up across England once it is ready. We will be holding these workshops in May, again in London and Manchester. Spaces are booking up quickly, so if you’re a professional and you’d like to get involved, please contact me for further details.
Finally to say that I was delighted by the spirit in which last month’s Core Group (essentially the National Bereavement Care Pathway Project Board) was held. All members contributed to some really constructive discussions around vision, outcomes, timelines, training and evaluation, amongst other things. The sense of a shared purpose was very evident in the room. One could almost perceive a collective rolling up of the sleeves as colleagues recognised that we were moving into a new phase of the project and reaffirmed their commitment to take the pathway forward. In my experience, sometimes multi-agency meetings can (on occasion) go round in circles; what struck me here was the sense of a sharp, shared vision, direction and commitment. We are not going to deliver the pathway independently; as I said, collaboration is the key.
Next month I’ll let you know what we learned at the professional stakeholder events, and talk a bit about our timeline for the next few months.
In the meantime, best wishes to all those running the London marathon on Sunday, or getting involved in raising funds for fantastic charities up and down the country through other events!