In this second part of our coverage we look at what's missing form the NHS Long Term Plan
The bad: what is missing?
Whilst there are positive steps made in the Long Term Plan, there is a cause for pause amongst our community as a lot of issues we would have liked to have seen be included, have not been. We fought for these during the consultation process and will continue to campaign for broader recognition over the next ten years.
Access to innovative medicines
We asked NHS England to look at expanding the Accelerated Access Pathway (AAP) to include more drugs applicable to the least survivable cancers. In relation to this, the Long Term Plan has promised to speed up the path from innovation to business-as-usual, spreading proven new techniques and technologies and reducing variation.
Whilst we welcome the call for more innovative treatments to be produced and come to market, part of the problem of poor patient access to the best treatments is that NHS trusts are not taking up already established treatments, meaning treatments are available but their access is hindered.
This is what the AAP initiative is designed to do, to speed up access to new transformative healthcare technologies and treatments that have already been approved by NICE and available on the market. Treatments may be deemed cost-effective by NICE yet patient access may remain limited.
There are a variety of reasons for this. For example, there may not exist the finances necessary to initially invest in the product, it might be difficult to get clinicians to change to a new treatment in place of one they may have been using for many years, or there may exist regional differences in the speed with which some new treatments are made available.
We're pleased the plan's measures will speed up treatments from the point of innovation but at the same time we're disappointed NHS England have not taken into account the AAP initiative and recognised, for patients, there exists real and tangible access issues to medicines which are already on the market.
The Less Survivable Cancer Taskforce survival target
We are disappointed that the NHS has not committed to a survival target for the less survivable cancers – brain, pancreatic, oesophageal, stomach, liver and lung. In October 2018, alongside other members of the Less Survivable Cancers Taskforce we delivered an almost 16,000 strong petition to 10 Downing Street calling on NHS England to commit to doubling survival of the less survivable cancers.
This target would pave the way for saving up to 10,000 lives a year. We will continue to urge the NHS and Department of Health and Social Care to adopt this target and do more to ensure that lives are saved and that survival rates improve in a meaningful way. It is vital the voices of our community are heard and steps are taken to make radical change for brain tumour patients.
Neuro-Oncology Fellowship programmes
Lastly, during the consultation phase, we asked for the inclusion of Neuro-Oncology Fellowship programmes for medical and clinical oncology trainees in order to facilitate a year of highly specialised training. Currently, there are no dedicated Neuro-Oncology Fellowship Programme for UK trainees.
Along these lines, generally, there is a lack of brain cancer scientists in the UK and this is hampering both scientific research and collective progress. Due to the rarity of brain tumours, it can be difficult to obtain comprehensive funding infrastructure to conduct research into these types of tumours.
Dedicating specialised fellowship programmes for brain cancer will offer the trusts offering these posts clinical expertise at the same time filling a research gap in a disease area harbouring historically low rates in survival and patient care & experience.
We will continue to work with NHS England to try and implement these vital funding posts to ensure that those diagnosed with a brain tumour are benefitting from a vibrant and engaging research area to improve their survival and quality of life.