Cameron Miller, Head of Policy & Public Affairs, reports from the first day of the 2018 Conservative Party annual conference
Today we attended the Conservative Party Conference in Birmingham. We had set up a range of meetings and will be attending events to meet with key individuals to talk about our work.
In the morning, after meeting with several other charities and seeing where we can work together, there was an event on 'Health technology and patient empowerment: How can data save lives?' run by Prospect Magazine.
Lots of calls were made for there to be real and genuine investment in technology as the value could be seen to really change things in many different diseases from prevention and education to treatment and quality of life.
There was genuine concern from the panel the best talent and expertise may not be able to be attracted following Brexit and for the UK to be seen as a leader in this space we need to ensure that the best people in the world see this an innovative place to work which will be at the forefront of developing new and pioneering projects.
People were also passionate about ensuring patients were involved in the development of new ways of sharing data.
We know from our work on BRIAN that data sharing and technology has the impact and potential to be game changing in this space. We ensured BRIAN is a patient led project by it being shaped by our advisory group.
Surveying our community, 96% of patients would be willing to share their data. The problems we have found, and something that wasn't addressed at this meeting, was that the NHS institutions have overly complicated regulations in place and are trying to charge too high a price resulting in the NHS being unsupportive in these new initiatives in the ways they should.
We next moved onto a meeting regarding NHS Funding where the room was absolutely packed to hear this conversation on a hot topic following the announcement by former Secretary of State, Jeremy Hunt MP, of a substantial cash settlement for the NHS.
The discussion was incredibly interesting as the panel made the point we shouldn't look to define health in spending terms as much. We should frame the debate around the incredible things we can achieve and the outcomes we can produce.
There was also discussion of how we should define what we want to achieve, how we can achieve and then work back from there as to how we provide that service.
This is exactly what we are doing with our Low Grade CNS', as we look to prove the incredible benefits these nurses can have on people's lives and ensure that going forwards it is seen as a worthwhile investment for the NHS in the long term.
We then moved to a discussion about the NHS long term plan where there was frustration expressed that the cash settlement came before understanding the needs, and so now the NHS is rushing to try and create a long term plan to ensure it is spent correctly.
It was observed that in many ways it has been created the wrong way round, as you normally decide what needs to be done and then work out what it will cost.
There was also a feeling that we needed to be careful not to have this as a directive that comes top-down and is imposed. Also that we need to ensure that personalisation is at the forefront of the agenda and that workforce and patients are adequately represented when it is planned.
There was acknowledgement too that this is an exceptionally complicated area, as one panellist estimated around 17 work streams are inputting into the plan.
It was also good to hear from healthcare professionals who wanted to see more from the Third Sector and the NHS encouraging clinicians to engage with charities to help improve services and practice improved.
We have inputted into the long term plan submitting as part of the Tessa Jowell Brain Cancer Mission, Less Survivable Cancers Taskforce and ourselves.
This is to really ensure that the brain tumour community are represented and that this disease area is at the forefront of legislators and civil servants' minds as they create it over the next couple of months.
Once they have published it, we won't let that be the end either, as we will ensure we always empower our community to make the biggest changes possible.