Have your say on the future of NHS England!
Background
Following the publication of the Darzi review which highlighted the challenges and difficulties that NHS England is facing and has encountered, the government has now called for organisations and the public to inform the development of its new 10-year Health Plan for NHS England.
The 10-Year Health Plan for England is hoping to modernise NHS England and ensure that it can operate effectively in the future and meet a rise in demand.
As part of the development of the new plan, the government is asking for you to share your views and experiences of care you’ve received from NHS England. The government also wants to know your thoughts on the “three big shifts” they have planned for NHS England:
- Moving more care from hospitals to communities
- Making better use of technology in health and social care
- Focusing on preventing sickness, not just treating it
You can share your views by completing a short consultation form before 5.00pm on 2 December 2024.
We’ve put together the following advice to help you respond and make sure the experiences of those affected by brain tumours are reflected in the 10-Year Health Plan.
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Everyone over the age of 16 living in England.
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It should only take a few minutes to complete the form but please do take as long as you need to complete it. You can also come back to complete your feedback at a different time.
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Technically, the consultation will remain open until spring next year, but it’s been advised to submit answers by 5.00pm on the 2 December as that’s when the first batch of submissions will be accepted.
Sharing your personal experiences
To begin, you’ll be asked to share what you think are the three best things about NHS England today.
You’ll then be asked to share what you believe are the three biggest challenges facing NHS England.
Please do take the time to think about your own experience (and the experiences of your loved ones) and share what this means to you for the two questions above. We recognise that you may have experiences outside of brain tumours and we would encourage you to include anything you think is relevant.
The consultation then talks about the findings from the Darzi review which outlines some of the difficulties that NHS England is currently facing. In this section, you’ll be asked to select any challenges you’ve personally experienced with NHS services from a list provided – for this question you can tick as many boxes as you wish.
The next question asks you to select up to three of the challenges that you think most urgently need to be addressed in the health plan.
Your thoughts on the “three big shifts”
The next part of the consultation wants your views on the “three big shifts” that the government believes are the key changes needed to improve health and care services in England. We’ve provided some guidance on how we believe they might impact elements of brain tumour care.
The questions in this section are optional to answer. So, if you’re unsure or feel like you can’t answer some or all the questions you can move on to the next question and still submit your response. The below are suggestions, so please only include what you’re comfortable with.
Shift one: moving more care from hospitals to communities
What is meant by shifting care from hospitals to community
The government has expressed that it wants to move more healthcare services outside of hospital settings and into more local areas. This means an increase in services taking place in settings such as GP practices, pharmacies and in people’s homes. Ultimately, it’s hoped that by moving to more community care, hospitals can focus on the most serious illnesses and emergencies. Examples could include diagnostic scans and testing, treatment for minor injuries or ongoing treatment and therapies.
Question: In what ways, if any, do you think that delivering more care in the community could improve health and care?
Delivering more care in the community could result in some benefits the brain tumour community, such as helping achieve a faster diagnosis. A shift towards the community could mean a move towards a focus diagnostic testing within a community setting rather than in a hospital. For this to happen effectively, pathways must be in place to enable GPs to send those with worrying symptoms related to brain tumours to receive a scan quickly.
To effectively shift care from hospitals to communities, there must be an increase in investment in GP services alongside investment in secondary care workforce. This includes increased investment in Community Diagnostic Centres (CDCs) ensuring they are adequately resourced, and that GPs can refer to imaging within this setting.
It’s also important that the role of opticians is not overlooked in the diagnosis of brain tumours. Brain tumours can be detected in the optometry setting and any shift towards the community must involve the input of optometrists. It’s also important to develop a dedicated optometry pathway to enable a faster, more efficient diagnosis.
A faster diagnosis means that treatment, care and support can be provided at the earliest opportunity – potentially leading to people living better lives after their diagnosis. This can provide a whole host of benefits from improved health outcomes and increased emotional well-being to greater opportunities to participate in research and better care experiences.
We think it’s important to highlight:
- How any shift towards community care must also come with an increased investment into GP services.
- There must also be adequate investment into scanners and radiology departments including workforce to ensure that scans are able to take place promptly and efficiently in community settings including in CDCs.
- That effective pathways must be built to support GPs to efficiently refer those with worrying symptoms related to brain tumours in the community.
- Sharing any experience of accessing diagnostic testing treatment or care in the community – for example, if you have experience of visiting a CDC or optician.
Question: What, if anything, concerns you about the idea of delivering more care in the community in the future?
Any shift towards delivering more care in the community could place increased burden on primary care professionals including GP services and pharmacists. This comes at a time when we know that GPs are already finding it difficult to meet demand. In its latest annual survey results, the Royal College of GPs (RCGPs) revealed that over 70% of GPs shared that they believe that patient safety is being compromised by excessive workload. There have also been reports of pharmacist practices closing at an alarming rate and GP shortages in parts of the country.
As a result, we believe it’s essential that the government invests in primary care services and workforce to ensure this shift can take place effectively without overwhelming current capacity.
We believe it’s important to highlight:
- That GP services and other frontline NHS services are already stretched. A shift towards more community care could increase pressure on these services. As a result, there must be adequate investment in GP practices and workforce to ensure that future demand is met.
- We don’t want to see an even more overstretched service as it’s vital that people experiencing concerning symptoms – like those linked to brain tumours – or are feeling unwell are able to get an appointment with the necessary service as soon as possible.
Shift two: making better use of technology in health and care
The government has described this shift as a need to improve how we use technology across health and care. Examples provided include the need for better computer systems, video appointments or AI scanners that can identify disease more quickly and accurately.
Question: In what ways, if any, do you think that technology could be used to improve health and care?
We think technology can be used to improve the diagnosis and care for people with brain tumours. Technology involved in Whole Genome Sequencing (WGS) is already in use within NHS England. Genomics is the study of an organism’s DNA or genome and gives scientists a deeper understanding of the tumour they’re investigating.
This is an important technology that helps the brain tumour community in several ways, including enabling more precise diagnoses, more precise treatment and providing scientists with more understanding of how brain tumours start, develop and recur.
There are also emerging technologies which may improve outcomes and quality of life for those affected by brain tumours. This includes different simple tests which may help with the diagnosis of brain tumours. With brain tumour symptoms being both vague and non-specific, and the only current definitive test being an MRI/CT scan, when such a test becomes available and embedded within the NHS, it could be of huge benefit to the community. It could lead to efficiencies and cost reductions to the NHS as it will lead to people being prioritised to MRI/CT scanning depending on the results of the test.
We believe it’s important to highlight:
- That there are emerging and available technologies that can help improve outcomes for those diagnosed with brain tumours. This includes the development of a simple different tests to aid a faster diagnosis and through the use of WGS.
- According to a report published by the Tessa Jowell Brain Cancer Mission this year, few people are gaining access to WGS despite it being commissioned by NHS England. Their findings revealed that under 5% of UK adults living with a brain tumour had their tumour sequenced through the NHS in 2023. This must improve.
- The government and NHS England must include information for how emerging innovation and technology will be successfully embedded into our NHS and monitored to ensure such technology is of benefit to those affected by brain tumours.
Question: What, if anything, concerns you about the idea of increased use of technology in the future?
In terms of the increased use of technology – our concerns are largely around the rise in digitalisation and use of technology on mobile smart devices within NHS England. Brain tumours don’t discriminate as there are no known preventable risk factors and they can impact anybody no matter their background. In fact, age is a risk factor meaning the older you get the greater your chance of developing a brain tumour. Therefore, it’s important to note the potential challenges that some may face, particularly older people, with the increased use of technology.
We know that some groups of people – for example, disabled people, older adults and people from lower socio-economic backgrounds – may face challenges accessing and using certain technologies. This can include digital applications on a mobile device. This may be due to a lack of digital literacy, inaccessible interfaces and a limitation around resources such as not having a smart device or being able to access the internet. Data from NHS England suggests that 7% of households don’t have access to the internet at home.
We believe it’s important to highlight:
- That any future technological developments and innovations embedded or piloted within NHS England are designed with accessibility in mind, with the necessary training and support being provided to ensure equity of access to its use.
- To properly acknowledge and involve people from groups that are most at risk of digital exclusion – for example, disabled people, older adults and people from lower-socioeconomic backgrounds – in plans increase use of technology in health services to ensure it’s accessible to everybody in society.
Shift three: focussing on preventing sickness, not just treating it
This shift focuses on spotting illness earlier and tackling the causes of ill health which could help people stay healthy and independent for longer. And, as a result, take pressure off health and care services.
Question: In what ways, if any, could an increased focus on prevention help people stay healthy and independent for longer?
It’s thought that just 3% of brain tumours in the UK are preventable, meaning the vast majority of them aren’t. While there are ways everyone can reduce their risk of cancer and becoming ill in general, including by exercising regularly, staying safe in the sun and not smoking. We still don’t yet know enough about how brain tumours develop to suggest ways to prevent the majority of cases.
We must make sure that in any long-term health plans, non-preventable cancers aren’t forgotten and don’t continue to fall further behind progress made.
We believe it’s important to highlight:
- That 97% of brain tumours in the UK are thought to be unpreventable. This means that any focus on preventing illnesses is unlikely to benefit the brain tumour community.
- We need to ensure that government doesn’t forget that not all cancers are preventable, and they cannot risk diseases like brain tumours falling further behind progress made.
Question: What, if anything, concerns you about the idea of an increased focus on prevention in the future?
For this question, once again it is important to reiterate that brain tumours are largely not preventable.
The concern here lies around the fact that, brain tumours are not a preventable cancer and any programmes of work that look to focus on prevention risks this disease area falling even further behind progress made in other cancers. This must not happen.
We believe it’s important to highlight:
- A continued and increased focus on prevention must not mean that some diseases are left behind. Diseases that aren’t preventable must be continuously included in health care programmes.
- Brain tumours should be treated as a clinical priority to ensure that funding is invested into research to develop our understanding of how brain tumours develop, grow and behave. This will be instrumental in helping us find better ways of detecting, treating and ultimately curing brain tumours.
Satisfaction with the NHS
After the section on the government’s “three big shifts”, the consultation touches on whether you’re satisfied with how NHS England is currently run. You have five options to choose from ranging from “very dissatisfied” to “very satisfied”.
You’ll then be asked what NHS services you’ve used over the past 12 months. There’s a list of NHS services provided, and you can choose as many as you’ve used.
About you
There’s a final section of questions about your personal characteristics and it’s entirely up to you whether you’d like to provide this information. Any answers to these questions will be grouped with responses from people who share the same characteristics, so you will not be personally identifiable in the analysis.
Finally, remember to click ‘Submit’ so your results are saved.
One last thing!
You’re almost done! Do make sure to double check you’re happy with the answers you’ve provided, because once you’ve submitted your response you cannot change your response.
If you’re happy – the final thing to do is to click submit and your response will be collected!
Thank you so much for taking the time to submit a response to the government’s 10-year health plan consultation, we really appreciate you acting and we hope that together we can have a big impact as the government will see these important issues multiple times in their analysis.
Please encourage your friends and family to fill in the survey too. We’ll be sure to keep the community updated on the next steps of the development of the 10-Year Health Plan as and when it’s announced and will be sharing our own response as an organisation with you soon.
If you have any questions or would like any further information, please contact the Policy & Campaigns team at policy@thebraintumourcharity.org
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