Founder and CEO, Brain Tumour Support
The last meeting in 2018 of the All-Party Parliamentary Group on Brain Tumours (APPGBT) has rounded off the year with an important question which affects all people diagnosed with a brain tumour and is the title of a new report – ‘Brain Tumours – a cost too much to bear?’
The official launch of this report at the General Meeting on Tuesday evening brought together people from all walks of life, because as we know, brain tumours don't discriminate.
Whilst a review of the APPGBT inquiry into the economic and social impacts of brain tumours was discussed, most of the meeting was consumed with further testimonies from people who desperately wanted to be heard. Their stories were heart-wrenching and some of their experiences almost unbelievable.
In the report, an expert in family caregiving Dr Florien Boele, points out that “family caregivers often struggle to cope more than patients”. She states that this was “a result of a lack of support available for caregivers due to, for example, a lack of specialist nursing staff”.
I believe that upon hearing these stories, there were learnings for us all in that room:
- Giving bad news is a hard thing to do, but time and time again we hear that it isn’t being executed sensitively enough
- Help with managing expectations – more honesty is needed together with information and guidance
- How palliative care should be introduced as an earlier stage option because palliative care doesn’t actually mean what most people think it means
- The need to be put in touch with all the people who can help you along the way, some sort of checklist on a practical level
However, as I sat listening to everyone on the panel and then members of the public share their experiences, I wanted to shout out in frustration.
Brain Tumour Support is a support charity, working in partnership with Macmillan, currently providing tailored, specialist support to families.
And yet within our fragmented brain tumour community, not enough people who should know about us actually do know about us and what we can do to help.
Our Brain Tumour Support Workers already recognise that the caregivers struggle and we know that specialist nursing staff are limited due to NHS funding.
Brain Tumour Support Workers exist to allow medically qualified staff to concentrate on clinical needs, whilst our Support Workers can combat the complex emotional and social issues. This model of support may not be able to change clinical outcomes, but it certainly can turn lives around.
I urge you all, let us look at what Brain Tumour Support knows is already working out there and seek to provide more of it.