Reimagining Rehabilitation Roundtable

Aim

Over 12,000 people in the UK are diagnosed with a primary brain tumour each year. To help people with brain tumours maintain function and quality of life, rehabilitation support is needed from a range of healthcare professionals (HCPs), including physiotherapists, speech and language therapists, occupational therapists and dietitians (collectively referred to as allied health professionals [AHPs]).

However, stark geographical variations in the quality and extent of brain tumour rehabilitation services in the UK highlights an unmet need in this area. To address this, we led a multistakeholder roundtable focusing on improving rehabilitation for adults with a brain tumour. The project was conducted in collaboration with Tessa Jowell Brain Cancer Mission (TJBCM).

Approach

Pre-meeting

We conducted a targeted literature review (TLR) with an aim to identify information relevant to guidelines, best practice, and unmet needs in brain tumour rehabilitation, and identify research gaps. We then organised and led a focus group comprising of specialist AHPs to gather further insights on the main barriers to providing optimal care with respect to brain tumour rehabilitation, and key gaps in guidelines and in the brain cancer rehabilitation evidence base. Outputs from the TLR and focus group helped to shape the agenda for the roundtable.

Suitable roundtable participants were identified through stakeholder mapping and were invited using a custom-designed HTML invitation. We handled all logistics associated with the hybrid meeting format to maximise accessibility.

On the day

On the day of the roundtable, we ensured smooth operation by hosting attendees and structuring discussions to encourage active participation and insightful contributions from all attendees. Roundtable attendees included seven HCPs covering three specialisms related to brain tumour rehabilitation, and three key charity stakeholders or patient representatives. This diverse group of experts provided multiple perspectives to ensure well-rounded discussions.

The roundtable began with a short talk on the current rehabilitation landscape for adults with a brain tumour, including the patient voice (via audio clips), before moving on to dedicated discussion sessions covering key challenges in providing rehabilitation for adults with brain tumours, potential solutions to address key barriers, and actionable recommendations.

Post-meeting

We developed a concise summary report of the roundtable discussions, working with our in-house Designers to ensure that this was visually engaging, with photos from the day and infographics. Recommendations made during the meeting were synthesised into an actionable ‘roadmap’ to improve quality of life for people with brain tumours across the UK.

Finally, we supported with the launch of the report on social media and dissemination of its findings to key stakeholders through various routes. These included a presentation at a Joint Strategy Board Meeting for TJBCM and UK brain tumour charities, a press release, and wider dissemination by a range of professional bodies and societies, and NHS Trusts.

Impact

The summary report was published in March 2024 to coincide with Brain Tumour Awareness Month and was presented by Costello Medical at the TJBCM Joint Strategy Meeting, attended by senior representatives from all UK brain tumour charities, the Department of Health and Social Care (DHSC) and National Institute for Health and Care Research (NIHR). Informed by the report, a funding call was subsequently announced by the NIHR for care, support, and rehabilitation for people with brain tumours. Findings from the roundtable have also contributed towards the creation of two new AHP research fellowships, and the inclusion of rehabilitation in numerous toolkits and frameworks for best practice in brain tumour care.