The Atlas of Shared Learning
Group clinics for parents of children with sickle cell anaemia
A specialist community children’s nurse for sickle cell and thalassemia at Oxleas NHS Foundation Trust has implemented group clinics for parents of babies and children with sickle cell anaemia, with support from a health care assistant. This new approach has led to better outcomes for patients, better experiences for patients and staff, and better use of resources locally.
Where to look
Sickle cell anaemia is a disease in which your body produces abnormally shaped red blood cells. The cells are shaped like a crescent or sickle. They don’t last as long as normal, round red blood cells. This leads to anaemia. The sickle cells also get stuck in blood vessels, blocking blood flow which can cause pain and organ damage. Care of individuals with sickle cell anaemia is usually overseen by a team of specialist practitioners in the community.
Research suggests that group consultations are effective when supporting individuals with chronic health conditions, having positive effects on outcomes for the person as well as supporting clinicians to maximise their impact and time resources (Edelmann, D et al., 2012). Group consultations, also known as shared medical appointments, are appointments delivered by a clinician in a supportive peer group setting. They can replace routine one to one appointments and means that a nurse or clinician can see many patients at the same time, increasing productivity and access to routine care and follow-up appointments. The sickle cell specialist nurse saw an opportunity to use group consultations with sickle cell patients at Oxleas NHS Foundation Trust. The specialist nurse identified unwarranted variation in practice as group consultations were not a part of the clinical care pathway locally. This was resulting in increasing waiting times and combined with the research to suggest group consultations were an effective treatment option, the nursing team identified an opportunity to implement a programme to introduce groups at the Trust.
What to change
The specialist community children’s nurse for sickle cell and thalassemia works with children and young people who live with sickle cell anaemia and their families to deliver community-based care and support. Prior to the change, the specialist nurse was averaging three (one-to-one) home visits per day, with a large proportion of the caseload focusing on children under 1 year of age. This presented limited time to support families with older children through transition to adult care, who may also need additional support.
The specialist nurse identified that some families felt isolated because of the social stigma they perceived towards children with sickle cell anaemia and felt that group consultation sessions might be of benefit to these families. The specialist nurse wished to utilise the evidence advocating group clinics and to introduce these into practice in place of one to one home visits where appropriate. With a facilitator to support the group clinics, the specialist nurse estimated that the time taken to manage a full caseload of children (12 months and under) could decrease from 6 days a month to 2 half-day group clinics a month, held on the same day. This time could then be redirected to support families with older children who often struggle managing their condition into their early teens, as well as for the specialist nurse to take on additional clinical work within the community team.
How to change
The specialist nurse and a facilitator (a trained health care assistant with experience of working with children with complex care needs) were trained in group consultation best practice and group facilitation, which was funded by the Healthy London Partnership. The community nursing team obtained ethical approval from the Trust’s governance board. Thereafter, the specialist nurse and facilitator developed and tested a prototype group consultation that built on the generic model provided at the best practice learning workshop, adapted for the needs of the target community of families with a baby with a diagnosis of sickle cell anaemia. The team adapted educational materials and produced posters for the clinic.
The group consultation begins with the specialist nurse and facilitator taking key measures from a baby or child using a results board, which prompts measurement of key biometrics that need to be tracked by the team and supports parents to identify questions. The biometrics recorded include current haemoglobin level, percentage of baseline, blood oxygen level, heart rate, temperature and pain score. It is hard to ascribe ‘normal’ levels to babies with sickle cell anaemia, so clinician’s track each child’s progress by monitoring how close they are to their baseline level.
Once completed, the specialist nurse reviews the results board with the group, explaining what each number means and what parents can do to support their child; acknowledging the difference in numbers and what normal looks like for every child. The parents then have time to reflect and ask any questions. During a short break parents are encouraged to speak to each other and share stories and during this the facilitator and nurse review the questions to create the ‘parents’ agenda’ for a clinical session. The specialist nurse answers the questions, giving clinical advice but also encouraging the parents to share experiences and offer tips and advice themselves. At the end of the session, the specialist nurse and facilitator support the parents to set personal goals and agree any topics they would like to cover at the next session in 1-3 months’ time, advising the date and any follow up. The community nursing team also ran group clinics for young people, with a focus on transition to adult services. This worked well and supported children and young people to talk about what mattered to them and ask questions about their concerns.
Better outcomes – In the last year, the team have held 8 days of group clinics (16 clinics in total) for families with a baby under 12 months. Group clinics are now the main way to deliver care to this community, with 3 children and their families with more complex needs still receiving home visits – demonstrating personalised care is always a consideration. On average 5 families have attended each clinic, which can often create a group of as many as 20 people. Parents have been educated on how to differentiate between common childhood illnesses and symptoms that may flare due to their sickle cell. They are also supported to understand how to manage pain proactively and overcome concerns about addiction when giving their baby pain killers. These can help limit crises and unplanned hospital attendance.
Better experience – As parents have continued to attend group clinics, they have become more engaged with learning from each other and the clinician and the results board has become less of a focus for the group. Parents have reported that they learnt a lot more about the management of the condition in the group setting compared to a one to one and felt reassured by talking to other parents. The numbers of families involved so far is too small to draw any firm conclusions, however anecdotally, parents are preferring group consultations. One father reported that the usual clinics felt like a clinical ‘tick box’ and did not focus on what mattered to him, whereas the group clinic covered the issues that mattered to him as a parent. The specialist nurse really enjoyed delivering the group sessions and reported that some parents with whom she had struggled to engage with previously were now volunteering to support with the running of the group. With support and discussion, these parents reflected that the stigma and negativity had prevented previous engagement.
Better use of resources – Group sessions last on average two hours – it would have previously taken the nurse a minimum of 1.6 days to complete 5 one to one home visits for five families. This suggests that the clinical time saved by group consultation compared to home visits would be between 1 to 1.5 working days, which can be spent on other duties within the community nursing team. Oxleas NHS Foundation Trust is now considering how to apply group clinics more broadly within community nursing, such as in diabetes care. In order to further increase attendance and reduce ‘did not attends’ (DNAs), the specialist nurse is:
- Setting up monthly group clinics (2 on the same day);
- Inviting older children to attend during the school holidays (4 sessions) with a focus on pain management and planning for transition to adult services and supporting independence away from parents;
- Developing a positive, family centred narrative;
- Sharing families’ positive stories after attending the group clinic;
- Building parent mentors and volunteers – this is evolving and the plan is for these volunteers to start to raise awareness of sickle cell anaemia in the local community; and,
- Continuing evaluation to allow the positive family experience and learning to be demonstrated.
Challenges and lessons learnt for implementation
Providing learning support allowed the team to test their thinking in a safe environment; rehearse their group clinic model, train staff and consider organisational opportunities and challenges. At the first and second group consultations, few families attended, and whilst this was disappointing it gave the team the opportunity to rehearse a group clinic and gave them confidence in doing this.
Baby weight was removed from the initial Results Board because parents were making unnecessary comparisons. Heart rate and temperature were added, measuring these reinforces the importance of responding to infections quickly.
It is important to persevere. It can be hard to engage and change expectations amongst families who are used to home visits.
For more information contact
Community Children’s Nurse for Sickle Cell & Thalassemia
Oxleas NHS Foundation Trust