Marc Harder, Sands, National Bereavement Care Pathway Project, Lead
Marc Harder, National Bereavement Care Pathway Lead, Sands | 22 May 2017

Both National Bereavement Care Pathway professional stakeholder events, held last week in Manchester and London, were fully booked, with around 120 attendees from 90 different organisations in attendance. There was a huge buzz of excitement in the room as colleagues discussed the pathway’s potential, and the improvements that will come about through its implementation. It was both an encouragement and a privilege to be part of such enthusiastic discussions and to see how so many healthcare professionals support this project.

Both sessions began with an update from the project team before delegates split into groups for key discussions, the outcomes of which I’ve detailed below:

Pathway content:

  • Delegates felt the pathway should be built on evidence, enable parental choice and be centred around mum and family.
  • The pathway should be owned by all professionals across specialties, not only the midwifery team or bereavement specialists, and not just within the hospital setting. Delegates also felt it essential that there is buy-in from staff at all levels, including management.
  • It was suggested that the pathway should contain guidance on bereavement care, for example communication skills, memory making, and good signposting.
  • Documentation should guide professionals through the pathway, and equip them accordingly. Whilst checklists are helpful to ensure that important details are not forgotten, professionals also recognised the need to balance this against parents’ experiences of being on the receiving end of a ‘tick list’ exercise.
  • Professionals told us that the pathway should link in with other initiatives, for example the perinatal infant mortality tool and the Maternity Transformation Programme, and should be regularly reviewed to ensure it is high quality and continually improved.
  • Professionals caring for families need to ensure that they are also supported, and ensure that they have the opportunity to debrief with peers. This is something that parents had also previously raised – many recognised the impact their own tragedy had on those who cared for them.

Above all though, the pathway should be parent-focused and simple to use.
 

Format:

The workshops generated some great ideas in this regard.

  • These ranged from online materials to flowchart posters and from laminated ‘how-to’ guides to apps available on iPads. Other areas to explore were ‘parent passports’ or ‘parent profiles’, i.e. a document which parents take with them wherever necessary, in order to reduce the number of times ‘we have to tell our story again’.
  • Delegates wanted to ensure that all materials are accessible, both on- and off-line, and that they take into consideration parents’ language and other needs. It was suggested that there could be materials available to both professionals and parents.
  • There was an interesting discussion around the breakdown of the pathway. Should it be ‘horizontal’, i.e. working from early miscarriage through to SIDS, or ‘vertical’ i.e. by area of care – memory making, for example. This will be considered by the Core Group later this week.
     

Implementation:

  • The groups talked enthusiastically about how to get started and how to gain traction quickly. Ideas ranged from the ‘big bang’ of getting celebrities on board as ‘champions’ and a wide-ranging social media campaign, to a more organic approach of piloting the pathway in a number of sites before a national roll out.
  • It was recognised that the challenge is to also engage with those Trusts not represented at the two workshops. 
  • Those attending the workshops were keen to bang the drum for the NBCP ‘back at the ranch’ but acknowledged that there are many other priorities for senior managers to grapple with. As a result, delegates asked the Project Team to write to senior managers to gain support for the project.
     

Training:

  • The working groups recognised the importance of a high-quality training programme, but also acknowledged the financial constraints that may restrict a wide roll-out. It was suggested that online training tools / portals already in existence could be useful in developing a low-cost but far-reaching solution, as could the development of a ‘train the trainer’ programme to enable sub-regional training groups to emerge.
  • Regardless of the training programme’s eventual format, the pressing need is to ensure that all staff who touch the bereavement pathway are engaged and trained accordingly.
  • Again it was recognised that parents are a powerful voice of change and as such the parent voice should run throughout any training that is created.
National Bereavement Care Pathway, professional stakeholder event, london

So as you can see we received some great feedback, much of which echoes the feedback we heard from parents at our parent events earlier in the year. Clearly we will not be able to develop every idea or suggestion, but we will look at developing those which the Core Group feel are of most benefit, realistic and achievable. Thank you once again to all those who came and contributed.

Onto other news; you may remember from my last blog that I talked about collaboration being key. As you can see, the stakeholder events underlined this in the clearest way possible! What’s also been great has been the collective ‘reach’ of the Core Group. When you have the Royal Colleges (Obstetricians & Gynaecologists - RCOG, Midwives – RCM, and Nursing- RCN), the Neonatal Nurses Association (NNA), Bliss, Lullaby Trust, ARC, Miscarriage Association and Sands on the same group, you realise the possible extent of the reach and influence, even though parliament has been dissolved! For example, over the last couple of weeks jointly we’ve been able to contribute to the recently published Perinatal Pathway for Babies with Palliative Care Needs, and raise awareness of the NBCP through the Association of Early Pregnancy, the NNA Research Group, the MBRRACE (Mothers and Babies Reducing Risk through Audits and Confidential Enquiries) Group, ARC study days and Sands training days.

As we turn our eyes to June and July there’s a real recognition of the size of the task ahead! There is lots to do as we develop the guidance, training and other materials and as we hold conversations with a number of possible pilot sites willing to trial the draft pathway later this year.

In my next blog I will let you know how we’re getting on with the next phase of development, as our plans to develop, create training around and evaluate the pathway begin to take shape.

Do stay in touch – thank you for your support and interest in the project thus far.

Marc