A Department of Health and Social Care report highlighted inequitable delivery of neuro-rehabilitation in paediatrics across the UK. Therapists in the West Midlands working with this population have been aware of this variation in their region for a number of years.
Staff from Birmingham Women and Children’s Hospital (BWC) and Birmingham Community Healthcare Trust (BCHC) who were passionate about this patient group gathered information and evidence to identify and describe the problem.
National standards and relevant NICE guidelines were sourced and nationally recognised clinical leaders consulted; the aim of the project was to ensure aspirations of care delivery were grounded in the evidence base.
Patient feedback provided essential information about the true state of current services.
Stakeholder events created active working groups identifying achievable aims addressing the issues identified by the families and embedded the evidence. This project has improved pathways and services for children and their families.
Aims and objectives
To improve the experience and outcome of children's neuro-rehabilitation across the West Midlands.
To use national standards, NICE guidance and quality standards, service specifications and established paediatric neuro-rehabilitation pathways to advance the local provision through a systemic approach (health – acute and community, social care, third sector and education).
To create localised, easy to access and co-ordinated pathways for the children and their families ensuring the service is patient led.
To identify and raise awareness of the needs of this population and the gaps in service provision.
To make tangible, frontline improvements, by thinking creatively about our existing resources in the absence of a commissioned service.
To gather service user feedback to ensure we hear the voice of the child and their families and work with them to co-design a system wide service.
Consult with and engage stake holders from across the care pathways and all sectors by hosting targeted events.
Use social media to communicate key messages, share successes and link our work in with wider national agendas.
To establish working groups to identify and implement local solutions without the need for extra resources.
Reasons for implementing your project
The West Midlands has no formally commissioned pathways for paediatric neuro rehabilitation. Existing individual services have provided neuro-rehabilitation, with significant variation across geographic localities and professional groups. This resulted in some children experiencing good practice and others being lost in the system.
Due to a lack of identified rehabilitation beds, patients remained in acute beds for longer than needed and discharges were delayed due to the capacity of the therapy teams rather than medical need. The absence of a co-ordinated care pathway resulted in patients and their families reporting they were unclear about the resources and rehabilitation available to them. They were left feeling abandoned at times by the system; they felt especially lost at times of transition from one service to another.
As a regional centre, therapists at BWC recognised there was no established standardised pathway of care from acute admission through inpatient rehab in to community rehab. Their own inpatient pathways were in need of review and improvement, and it was recognised input offered was resource driven.
Within the region post discharge options for on-going therapy and rehabilitation are dependent on local service models. Only one residential centre in the country for specialist neuro-rehabilitation is available for West Midlands patients. This centre is situated in Surrey and is not always a viable option for families given the distance and upheaval.
We also identified a need for change by holding a family and patient engagement day where children, young people and their families who had accessed neuro-rehabilitation in the West Midlands shared their stories of positive experiences and gaps in their care. They told us:
- There needs to be better communication between professionals, agencies and areas
- They found telling their story over and over to different professions frustrating
- There was a dearth of information on services and what to expect
We found the materials created on this day (including a video of patient interviews) were integral to gaining engagement from key stakeholders.
How did you implement the project
We formed a project group with representatives from BWC and BCHC. These included Allied Health Professionals, Transformation Project staff and patient experience thus ensuring we had a range of knowledge and skills. A governance structure was created to ensure progress was communicated effectively and groups were held to account to meet their respective objectives.
Having identified key stakeholders both from the region and nationally from a multitude of sectors we held 2 stakeholder days bringing professionals and families together. We wanted to connect the lived experience of the patients and their families with the professionals delivering their care. At these days professionals made pledges and committed to improving current provision. Working groups were also established; the information gathered at the family day forming the basis of their project briefs ensuring the patient voice set the agenda. The working groups meet on a regular basis using a project management system to keep them on track and hold them to account to meet agreed actions.
We are keeping families informed about the project and progress we have made via “you said we are” posters. A family support worker who works for a national charity continues to consult with them to ensure changes are tangible.
A limitation of the project was the absence of allocated funding, however, we worked creatively to secure venues and meet costs within our existing departmental resources.
Part way through the project the support from the transformation project team was withdrawn due to lack of funding leaving working groups consisting solely of clinicians. They had specific knowledge and expertise around project management and how to transform services; this was invaluable. They were also the only team who had dedicated time meaning the project lead has had to take on more responsibilities without time being released from other commitments.
Local commissioners have engaged with the project and are welcoming a case for change to consider how funding could further improve the pathway.
The community Physiotherapy, Speech and Language Therapy and Occupational Therapy Services in Birmingham have agreed to fast track access for these patients and work as a multi-disciplinary team rather than in isolation thus mirroring the care offered in the inpatient service. Families reported they previously waited several months to be seen missing windows of opportunity to maximise potential. Now identified neuro-rehabilitation patients get picked up at the point of referral, providing in reach to the hospital to ensure smooth transition.
The local authority Occupational Therapy service in Birmingham and the children’s disability social work team have agreed to fast track case allocation for support and in particular the provision of equipment and recommendation of adaptations.
Community physiotherapists have 4 named therapists identified as champions who are receiving extra training. The Children’s Hospital staff are offering their knowledge, expertise and support to facilitate this.
The inpatient neuro-rehabilitation team have written referral criteria to help colleagues identify the children who need to have access. They have also written a clear service descriptor so others can know what to expect from their inpatient rehabilitation
The inpatient neuro-rehabilitation team now have an MDT Ward Round in the Hospital. The neuro-oncology service has also started a rehabilitation ward round.
A Service Directory with information on the services that may be able to support the families at different points in their journey has been produced and is being made available on an online portal.
The patient information leaflet about who you see and what to expect in hospital has been re-invigorated.
The importance of using goal setting and outcome measurements to inform the rehab has been promoted within the services and additional staff training is being provided.
Families are reporting more positive experiences of care and enhanced communication. Many of the gaps identified at the family stakeholder day are no longer raised as issues.
The project has been recognised as an excellent example of cross-system working.
Key learning points
We used the momentum and engagement from the project to engage influential stakeholder from the BWC executive board (Chief Officer for Strategy) and the regional commissioners. We consulted with them early so they were aware of our progress and proactive approach.
Some of the good practice development that emerged was localised to Birmingham where engagement was higher. The project group is now using scale and spread to support other teams to think about how they can use their existing resource differently to meet the needs of the patient population in a way that would be sustainable for their locality.
We invested a lot of time and commitment to really getting to understand what the problem was. This made identifying solutions and measuring change easier.
Our steering group consisted of clinical staff both from BWC and BCHC ensuring we had a good understanding of pressures across the pathway. Previous attempts involving BWC staff have failed as we were only able to influence a small part of the pathway.
Knowing there was no money, just removing the possibility of funding allowed us to work realistically but creatively.
We used our passion and connections to sell the project in person at meetings rather than relying on emails to build engagement.
The patient voice was central throughout.
We used social media to communicate more widely than the already interested stakeholders, which helped raise the profile of the project within the wider organisation.
Capitalising on nationally advertised events such as Brain Injury Awareness day to hold events meant we captured a new audience to inform them about the project and champion the needs of this patient group.
Identifying the correct stakeholders was vital, our list was reviewed several times to ensure we had people who could influence or make service wide decisions about change.
Keeping stakeholders updated via emails, at a range of forums and social media helped to maintain momentum and keep the project on people’s agendas.