Rennie Grove Hospice Care Annual Conference 2016 Report

Rennie Grove conference

Achieving individualised care through collaboration and partnerships – the way forward in the palliative and end-of-life community

 Reflecting the government’s recent commitment to ensure that the care people receive as they approach the end of life is personalised and focused on their individual needs and preferences, the theme of this year’s Annual Conference explored how healthcare providers can work together to achieve this.

Attended by more than a hundred professionals from hospitals, hospices and community settings at Pendley Manor in Tring, the day’s proceedings were chaired by Marie Cooper, Practice Development Lead at Hospice UK.

Professor Stephen Spiro, Chair of Trustees at Rennie Grove, spoke briefly about the importance of partnerships before Marie Cooper introduced the day’s keynote speaker, Anita Hayes from the National Council for Palliative Care (NCPC) who is the Programme Lead for “Building on the Best”.

Anita identified that the challenge for those working in end-of-life care was how to achieve individualised care for an increasing number of people, many of whom will be living alone.  She stressed the importance of showing how partnership and collaboration can work together to achieve change and reminded delegates that it was, rather aptly, NHS Change Day.

After setting the context, outlining the purpose of the NCPC and giving a brief run through of the national commitment to end-of-life care, she moved on to speak about the Building on the Best Programme, a partnership focused on supporting hospitals with improvement work.  She stressed that in order to achieve this, the whole system needs to be involved.

She outlined the important part that hospitals play in end-of-life care with the vast majority of people using hospitals in the last 12 months of life.  Of the 570,000 deaths each year, around half are in hospitals and while studies show that up to 87% of patients express a preference to die at home, more than 73% of people felt that hospital was the right place for a friend or relative to die.

After running through the reasons why the Building on the Best programme is needed, Anita stressed that shared decision making was at the heart of the programme and is what will improve the patient and carer experience. Pain and symptom management and effective communication when a patient moves from home to hospital and vice versa and the role played by the outpatient setting were highlighted as other essential elements of the programme.  

Anita talked through the Programme approach and the progress made so far and emphasised that success will entail using the collaborative improvement approach and supporting change in practice.  She concluded by saying that Building on the Best is about partnership and collaboration but more importantly it is about experience and people and working together. 

The second session of the day focused on Individualised Care Plans and was led by Helen Pegrum, Consultant Physician in Palliative Care and Jane Naismith, Lead Nurse in Specialist Palliative Care, both from Buckinghamshire Healthcare NHS Trust.

Helen opened the session by discussing the Liverpool Care Pathway (LCP), the issues that led to its withdrawal and the learning points to take from this.  In outlining the improvement journey for end-of-life care in Bucks, Helen highlighted the importance of patient and carer consultation and the need for a replacement for the LCP.

A period of consultation which included deep and meaningful focus groups led to the development of a prototype tool which is based on a Plan, Do, Study, Act (PDSA) model and is all about “getting it right for me”.   Incorporating the learning lessons from the LCP and the consultation exercise, there are two main components to the tool.  Jane explained that Part One is the Patient Held Record and focuses on getting to know the patient and their needs and wishes first, before asking anything about medical history.  Part Two is the Personalised Care Plan which allows a Nursing Care Plan to be developed based around five priorities; recognising, communicating, involving, supporting and doing.  Ideally this will be held by the patient in a similar way to maternity notes and will transfer with them wherever they may be receiving their care.  The nursing assessment in Part Two is informed by the patient wishes recorded in Part One.

The tool has now been rolled out in Bucks with early results showing a slow uptake in community settings, a patchy uptake of Part One, mainly being attributed to the challenge of having the conversations and the cultural change involved for staff.  Part Two is easier for staff to use.  There is, however, an increased uptake each month and education continues among staff and partner organisations to help ensure more comprehensive uptake.

Plans for the future include the production of accompanying leaflets, regular reviews of the tool to ensure it remains current, an ongoing push to implement the tool, especially in the community, inclusion of detailed symptom management guidance on the Trust intranet and a relaunch of the Nurse Verification of Death.

In the third session of the day, the focus turned once more to the community and the keeping of Just in Case medication in patients’ homes.  Dr Neil Pender, Consultant in Palliative Medicine at Rennie Grove Hospice Care and the Hospice of St Francis, started by challenging the meaning of Just in Case (JIC) medication.  It is widely accepted that it means end of life drugs but Neil suggested that this might be over simplified and that it could also include injectable drugs for symptom control, crisis packs and possibly other non-injectable drugs too.  Neil talked about first line treatments, emphasising that the disease being treated and the symptoms experienced do change what JIC medications are suggested.  He then used a series of case studies to illustrate this point and the fact that there are no hard and fast rules for medication choices.

Neil’s key messages were to ensure that all healthcare professionals know what JIC medications are available and that, in selecting them, likely symptoms and the anticipated evolution of the specific disease for a specific patient are taken into account.  He also stressed the need to weigh up the benefits and risks for the patient of stopping or switching medication.

The focus of the conference then switched to children’s palliative care when Debbie Kelly, Interim Service Manager for Children’s Services in Hertfordshire Community NHS Trust led a session on Transition – moving from children’s to adult services and the issues involved.

Debbie highlighted the many differences in the ways that children’s and adult services are delivered and what is covered both in funding and practical terms. She suggested that what young people need to be able to transition successfully is the necessary skills to manage their future needs. They need to learn to be decision makers in their treatments rather than their parents and they need to become expert in their own condition. 

Debbie recognised however that these young people are teenagers and they have all the usual preoccupations of teenage years so make up or going out might seem more important to them.  The danger in this is that if they aren’t managing their needs properly, the follow up in adult services is poor and they may well ‘fall off the cliff’.

Other reasons for failures in transition included the families’ attachment to paediatric services and the fact that many Paediatricians are also reluctant to transfer their patients to adult physicians.  The lack of involvement of GPs in children’s services was also highlighted as a problem as GPs lead most treatment for adults.

Other issues included mental capacity, the fact that children’s services stop at different ages and the differences in social care and funding for carers. Debbie used case studies to underline the difficulties that could be experienced and concluded that joint visits with adult colleagues might be a solution alongside the need to make preparations for transition several years ahead.

Sarah Burnard, Community Engagement Manager at St Joseph’s Hospice then led a session on Community Engagement and Partnerships in East London.  Sarah started off with a short history of St Joseph’s Hospice which illustrated that the area it serves, which spans several London boroughs, has always been ethnically diverse.  After a review of their service and the local community, the Hospice decided on a change of approach with a focus on making enduring, meaningful links with the local communities. 

She went on to talk about two projects that had been very successful in the local community.  The first was called Voice for Change which was designed to encourage local people to talk about death and was centred in Islington. The project started with extensive research into all the different local organisations involved in end-of-life care in the area and these were then all contacted with a view to promoting the project.  They also held a series of open events to encourage talk about end-of-life care and dying which were pretty poorly attended.  However, those that did turn up were connected to other groups and, although it was never the intention, they turned into a core group of supporters who have over the years become experts in end-of-life care.  They have turned into a compassionate community and are empowered to go out into the community and spread the word about end-of-life care. Because of the depth of their engagement in the project they have taken part in many projects including holding a series of community tea parties. Although they are just normal people living in the community, the group is very powerful and are a great advertisement for why we should widen horizons and think beyond the patient and carer.

The second project involved a partnership with the Hope for Home charity who wanted to fund a project which would be the first of its kind in the world and would introduce the Namaste approach to care into the homes of dementia patients.  The Namaste approach involves using the five senses and includes such things as hand massage, singing, dancing and reminiscence. The project involved recruiting volunteers from the local community to train in the techniques.  The project has been a huge success with over 90 volunteers training in a two year period and delivering 800 sessions in peoples’ homes.  Although originally set up only in Newham, the project has now spread to Tower Hamlets and Hackney and has also been replicated in other areas of the country. While Hope for Home do not fund the project any more, the partnership now continues with the volunteers themselves. Monthly telephone calls with the carers of those receiving visits have revealed the success of the project – so much so that the carers are now saying “what about me?”

The final session of the day was taken by the palliative care theatre-in-education group, Stories that Speak. The group of experienced palliative care professionals acted out stories to highlight the complexities of situations encountered when dealing with patients with dementia.  Using two powerful and thought-provoking stories about dementia patients, the theatre group set out to help delegates understand the patient experience as well as giving them the opportunity to appreciate the complexities involved in patient-family-professional interactions.  The stories also enabled people to gain insight into the impact of the dynamics of challenging situations on the professional or volunteer caregiver.

Marie Cooper then thanked everyone for attending and the conference drew to a close.