Update from Deborah Whiteley, Co-Founder, Tom’s Trust
Once again, a huge thank you from Tom’s Trust to The Hospital Saturday Fund for your wonderful donation of £10,000 in February 2019 – to help us significantly enhance the Clinical Psychology provision for children with brain tumours, and their families, at Great North Children’s Hospital Newcastle (GNCHN).
Your grant was a very generous contribution towards our campaign to raise the £101k needed to establish the service. I am now delighted to report that, following the September recruitment of a new full-time Band 7 Clinical Psychologist (Naoimh Fox, funded by Tom’s Trust) the enhanced service is now underway and that all bar £4k of the total Year1 costs have been secured. Thank you so much for your valued part in enabling this to happen!
Our new Tom’s Trust’s Psychologist in Newcastle
Naoimh recently completed her doctorate in clinical psychology. She has extensive experience working in multiple specialities including cancer, health anxiety, pain, adjustment and bereavement. Naoimh has already provided psychological support to many family members and siblings of those affected by illness.
She is trained in Cognitive Behaviour Therapy and has an interest in long-term health conditions and their associated mental health difficulties. Naoimh is committed to adapting her therapeutic style to accommodate each child’s unique psychological needs and abilities.
Naoimh will be supporting Lead Clinical Psychologist Dr Sarah Verity, previously the sole psychologist in paediatric neuro-oncology at GNCHN, who is employed by the NHS for 4 days a week.
The resulting increase in Clinical Psychology time and personnel will more than double the service’s capacity and mean that psychological support to around 200 children with brain tumours – and their families – will be possible over the coming months and years. This support will continue throughout the child’s adolescence as their brains develop and their challenges change.
Naoimh’s initial priorities and Year 1 goals will be:
1. Meet with all relevant stakeholders internally (hospital multi-disciplinary team) and externally (eg CLIC Sargent social work team) to plan respective priorities for the next few months, and service development work for the initial year of Tom’s Trust funding.
2. Identify and select appropriate methods of evaluation of efficacy of work (for reports to Tom’s Trust and service funders).
3. Plan and conduct an assessment of unmet psychological need in the service.
4. Take on her caseload of patients, siblings, and family members. (This is where the earliest impact on the service will be seen).
As per our original application, this new external funding and support for the Clinical Psychology service at GNCHN will now enable it to prioritise the following new initiatives:
- All children seen by the Psychology team from point of diagnosis. (Until now, due to limited personnel, initial support was often provided by a CLIC Sargent Social Worker and a nurse specialist).
- Introduce support groups for parents, siblings and bereaved families. (Hitherto any bereavement support has been given by CLIC Sargent and/or Outreach Nurses).
- Greater potential for face-to-face support in community settings (schools and family homes) when required.Limited till now, due to the hospital’s wide geographic catchment area.
- Developing specialist written information for children and families to help them cope with their challenges and signpost them to other organisations as required.
- A drop-in clinic for families to access whilst attending a medical appointment.
- Contribute to training programmes for other local community rehabilitation services. To develop their knowledge and confidence in understanding the psychological issues faced by young people with a brain tumour, and how this can impact on their future lives.
Additional Tom’s Trust funding for neuro-psychological pilot study (one day per week x 2 years)
Dr Sarah Verity, the Lead Psychologist, recently initiated a pilot study with a number of post-surgery children in her caseload. This is already showing great promise with regard to a range of novel interventions that are enabling these children to regain many of the focus- and processing-skills adversely affected during their treatment – skills crucial for their long-term improvement and adult lives.
Our charity’s trustees have met some of the families currently benefiting from the study and who are passionate about the positive outcomes for their children to date. We, too, are confident that, once Sarah’s study is complete and its findings evaluated, this will play a significant part in ensuring better futures for children with brain tumours.
In view of this, alongside the new full-time Clinical Psychologist post, Tom’s Trust has also committed to fund Sarah to pursue the pilot study on one-day-a-week over the next two years.
She expects to publish and disseminate details of her initial findings by late-2020.
Your support is helping all these new initiatives to proceed. Based upon them, and as the service grows, GNCHN and Tom’s Trust will develop a model of best practice to be shared in due course with other hospitals nationally.
How Tom’s Trust is helping children and their families at GNCHN
Here is just one further example in the words of a parent whose son, Ethan, has been supported by Sarah and the wider GNCHN rehabilitation team for much of his life to date:
Ethan was diagnosed with a Brain Tumour (Medulla blastoma) in January 2009 when he was three years old. Due to his surgery, radiotherapy and chemotherapy he spent a lot of time in hospital and the emotional and physical effects of this are still ongoing. Ethan is now 17.
Ethan suffers learning difficulties related to his tumour and treatment resulting in problems understanding and retaining information, health anxieties, OCD-like behaviours (for example hand washing), low moods and fatigue. Sarah has supported Ethan and me by providing strategies – for example distraction techniques – to deal with the anxieties and concerns and cope with his OCD which developed due to his diagnosis and treatment.
Sarah’s ability to talk with him and understand his worries and other feelings has really helped Ethan with his low moods. Her help and support has been, and still is, invaluable to Ethan’s mental health and well-being, which in turn helps the whole family understand and support him too. (Ethan’s mum)
Your donation and valued support to date have already enabled us to establish the enhanced GNCHN service with confidence.
We look forward to reapplying to Hospital Saturday Fund before the end of December and hope very much that your Trustees will wish to continue their support of Tom’s Trust and this project for the year ahead. The enhanced service is now underway and already making a life-changing difference to children and families across the North-East and northern England.
Deborah Whiteley, Co-Founder, Tom’s Trust.
Find out more about Tom’s Trust from their website: http://www.tomstrust.org.uk/