How can The Brain Tumour Charity use public affairs to improve the patient experience?

How can The Brain Tumour Charity use public affairs to improve patient experience for brain tumour patients in hospital?

Contents

The experience of brain tumour patients

The opportunity for The Brain Tumour Charity

Public affairs strategies and the brain tumour community

Strategy 1:  Relational

Strategy 2: Community building

Strategy 3: Persuasion

Conclusions and recommendations

Supporting Analysis

Measures and evidence

Public affairs strategies

Ethical considerations

References

Appendix One

The experience of brain tumour patients

The experience of brain tumour patients in hospital in England is considerably worse than most other cancers. The purpose of this report is to demonstrate a clear public affairs strategy that can help influence and engage key stakeholders to improve the experience of these patients. This will be measured through the annual National Cancer Patient Experience Survey (NCPES). This report will outline the current situation and how public affairs can help address this, how I have collected my evidence, a detailed analysis of the issue and a clear strategy to positively influence the outcomes. I will not consider Scotland, Wales or Northern Ireland as part of this assessment as the delivery of healthcare services in these nations is devolved.

The NCPES is “designed to monitor national progress on cancer care; to provide information to drive local quality improvements; to assist commissioners and providers of cancer care; and to inform the work of the various charities and stakeholder groups supporting cancer patients”[1] As such, it provides a rich insight into the experience of brain tumour patients and areas where it is failing.

As you can see from Table 1, when you look at the positive value scores compared to the other cancers, it is clear that brain tumours performed the worst of any cancer in 2016 and 11^th in 2017. Within the survey are clear examples of where brain tumours are performing particularly badly in relation to the delivery of a service or outcome.

Table 1: National Cancer Patient Experience Survey Analysis 2016 & 2017[2] [3]

The data is taken from the tumour scores tab in the national results report.

England	2016 (%)	Rank	2017 (%)	Rank
Brain	69.1	13	73.2	11
Breast	76.6	2	77.3	2
Colorectal / LGT	75.1	4	76.1	4
Gynaecological	73.6	10	74.2	7
Haematological	74.2	6	74.4	6
Head and Neck	73.9	7	74.1	8
Lung	74.7	5	75	5
Prostate	75.8	3	76.9	3
Sarcoma	73.9	7	71.2	13
Skin	78.2	1	78.9	1
Upper Gastro	73.7	9	73.7	9
Urological	72.9	11	73.3	10
Other	72.3	12	73.1	12
Total	74.8		75.4

The opportunity for The Brain Tumour Charity

The Brain Tumour Charity is the largest brain tumour charity in the UK, and it describes itself as at the “forefront of the fight to defeat brain tumours”. In regard to public affairs they state their objectives include raising awareness of brain tumours “to reduce diagnosis times and make a difference every day to the lives of people with a brain tumour”[4]. Therefore, it is in a good position to be able to affect positive change through a public affairs strategy.

Public affairs can be defined in very broad terms with some seeing it as an all-encompassing term and others narrowing it down much more to a specific entity, scholars have defined it as a range of things from media relations to lobbying[5]. For the purposes of this report and for The Brain Tumour Charity in this context it will be shown as an instrument for lobbying as this is widely regarded as a legitimate purpose of public affairs.[6] [7]

To effectively improve the outcome of the NCPES for brain tumour patients The Brain Tumour Charity must understand their community, ensuring that they are adequately represented. They must subsequently then understand the detail and specifics of an issue to understand the patient experience to know how to lobby for the change they need to see. Government bodies are generally open to working with third sector, or non-governmental, organisations to help enhance their work.[8] This gives The Brain Tumour Charity an opportunity to use public affairs to benefit its beneficiaries by improving results.

The NCPES is conducted every year and is made up of 59 questions with 51 questions measured as positive or negative answers. The questions with a positive answer and negative answer are then turned into a percentage of respondents who answered positively by tumour type. As such it is important to look at the data in more detail and pick out the key areas that can be influenced for change, and by looking at two years side by side, it ensures that the case is built rather than just from one example in a year but rather over a number of years and constituting a more significant pattern.

In 2016 the worst performing question, relative to the averages of all cancer types, was question 54:

“Did the different people treating and caring for you (such as GP, hospital doctors, hospital nurses, specialist nurses, community nurses) work well together to give you the best possible care”.

The differential for this question was a significant 17.9%.

Question 35 was next:

“During your hospital visit, did you find someone on the hospital staff to talk to about your worries and fears”

This had a variance of 14.3% from the average.

Question 1 followed:

“Before you were told you needed to go to hospital about cancer, how many times did you see your GP (family doctor) about the health problem caused by cancer”.

This had a variance of 13.7%.

In 2017 question 35 had improved and so was no longer in the bottom three of the worst performing measures for brain tumour patients. However, questions 1 and 54 in 2017 were the worst performing indicators this year, with question 54 emerging as the worst performing. Question one was 8.9% from average.

This worst performing question 54 indicates a pattern of consistency around which a public affairs strategy could be based. It is significant that the performance of brain tumours overall in 2017 was much better, hence the move from 13^th to 11^th, as shown in Table 1, but this question still performed well below average. Question 54 was 9.1% from the average. A detailed breakdown of all questions and the figures can be found in Appendix One.

It is therefore clear that the public affairs strategy for The Brain Tumour Charity must lead to the implementation of models of care such as The Integrated Subspecialist Multidisciplinary Neuro-oncology Service to help improve patient experience for brain tumour patients. Question 54 has been selected as the key measure of success and method for improvement in this instance. This question is examining the role of the healthcare team working well together to give a patient the best possible care. The Integrated Subspecialist Multidisciplinary Neuro-oncology Service is the model shown to improve this, and, by applying this model of the team working together, it can lead to various improvements, including a higher percentage of patients discussed in a Multidisciplinary Team (MDT) pre-operatively, an increase in the rate of surgical resection, and the median length of stay in hospital was reduced.[9]

Public affairs strategies and the brain tumour community

Third sector organisations can play a large role in public affairs and many organisations state explicitly that part of their purpose is to lobby or influence. A good example of this is the NSPCC who managed to secure £1.5m to be spent by the Home Office on educating young people about the dangers of the internet. There are many examples of third sector organisations engaging with politicians and their communities to help influence public policy, and indications that MPs are more willing to engage with third sector organisations than they are private enterprise.[10] [11] This shows that this is an avenue that The Brain Tumour Charity can exploit more than any other to make change.

There are three different public affairs strategies that are possibly most applicable to The Brain Tumour Charity in this endeavour.

Strategy 1: Relational

The first is through a relational method whereby you acknowledge that those with the power to change outcomes for brain tumour patients are few in number and so can be targeted with hope of far greater impact than broad methods of communication.[12] There are some distinct advantages to this method for The Brain Tumour Charity. The charity does not have a large influence over national media and key stakeholders, but by having a focused, knowledgeable team they are more likely to be able to reach the right people who pull the levers.

This method has also been proven to work within the brain tumour community. On the 25^th January Baroness Jowell spoke in the House of Lords and said, in discussing her treatment for her brain tumour and highlighted that she was one of a lucky number of patient who received a specific surgical dye.[13] In the same debate Lord O’Shaughnessy, Parliamentary Under-Secretary of State for Health and Social Care, replied that he had spoken with NHS England and that they have promised to roll it out nationwide.[14] In addition to this, upon the release of new National Institute for Health and Care Excellence (NICE) for brain tumours, Cally Palmer, NHS England’s National Cancer Director, has since confirmed that this will be rolled out nationwide.[15] Someone like Baroness Jowell was able to achieve this by being able to table a debate in the House of Lords where a Government Minister is required to respond, addressing the points she has raised.

Though a relational strategy is not without its disadvantages, you need to gain direct access to those key individuals who can make a real difference on the outcomes you are advocating for. Baroness Jowell not only served in the House of Lords but was also a former Public Health Minister.[16] This meant she had an unusually high level of immediate access This level of access is hard to get and not available to The Brain Tumour Charity and so various methods of gaining that level of access would have to be utilised to reach the appropriate people.

Strategy 2: Community building

Community building in today’s age is about amplifying a message by using the collective voice of those representing an issue or cause. Today this would involve embracing technology and harnessing the power of emails and online petitions. Especially given that there is now no difference between the amount of attention given to an email as a letter. ²¹ The Brain Tumour Charity claims that the community of those affected by a brain tumour diagnosis stands at around 100,000 families.[17] This means there is a substantial group of people out there who are willing to take action and advocate on behalf of the community.

This method also has some history of success within the brain tumour community with a petition that was started by a family personally affected by a brain tumour. The petition called for increased funding into research into brain tumours and attracted over 120,000 signatures, a subsequent debate in the House of Commons, attended by 70 MPs, and the creation of a Task & Finish Working Group to examine brain tumour research. [18]

This method does have its disadvantages too. The petition closed in February 2016 and was debated in April 2016, and yet the report was only published in February 2018. ^xv This gap is considerable and though the report acknowledges that the lack of funding is not the primary issue today and so examines some of the other blockages to brain tumour research, and so not directly addressing the initial intent of the petition. There are also, arguably, question marks over the recommendations within the report as there is little indication of significant government support or intent to meaningfully change. For example, the report appears to summarise previous work by stating things like “All of these should be embraced by researchers and research funders”, “It will be important for these recommendations to be embraced” and “Community leadership and co-ordination will be important”. ^xv None of these phrases indicate anything but a continuation of the past rather than recommendations for distinct change. This demonstrates how engagement does not always mean progress towards a goal.

Strategy 3: Persuasion

Lastly there is a persuasion strategy where an organisation would like to change the attitudes or behaviours of a particular group by highlighting key issues that are affecting those they represent. This has been likened to propaganda, however it is possible to distinguish this approach from propaganda by ensuring it is part of a two-way conversation with the group you are trying to influence.¹⁰ The practical ways in which The Brain Tumour Charity could use this method would be to engage in consultations or information gathering exercises that are seeking evidence to improve practice, implementation or delivery of healthcare services for brain tumour patients.

The advantages of this method are that it is engaging with a group who are already proactively seeking this type of information. In this context you also have the advantage that NHS England explicitly state that the information from the NCPES is to help inform the work of charities so that it can drive improvements. ²

There are examples of The Brain Tumour Charity using consultation opportunities to help inform its work. It is a member of a coalition of organisations called the Less Survivable Cancers Taskforce, a coalition that represents those cancers with a survival rate of under 30% over five years. This group campaigns on several issues but recently has been pushing for a survival rate target to be set explicitly for these diseases. In 2018 NHS England had asked for submissions to help inform the long-term NHS plan, following a substantial cash settlement investment from the Government. [19] This coalition submitted a formal response to this consultation as well as arranging a meeting with key influencers at NHS England to discuss its issues including the survival target.[20] This shows a clear use of a consultative approach to achieve a desired outcome.

There are disadvantages with this approach though, as the organisation are competing with substantial numbers of other interests in an approach like this. Any public consultation has many disparate groups and individuals contributing to the outcome. It can also split focus as with multiple consultations open at any one time, that all link into improving the lives of brain tumour patients, this draws the team’s attention towards responding to consultations and meeting those deadlines as opposed to delivering quality responses to a few, where the can make the biggest impact.

Conclusions and recommendations

Ultimately these strategies all overlap and have similar aspects to them, though you could see this as a weakness in theoretical terms it is probably a strength when designing a practical public affairs strategy for The Brain Tumour Charity. This strategy must pull together aspects of all three of the above methods to create a comprehensive and clear strategy that will bring about real change. The Brain Tumour Charity has opportunity of running a true hybrid campaign by combining these methods, as NHS England would welcome this analysis and highlighting of it, but it would also rouse a community to get behind a specific cause.[21]

The first step must be to identify the key decision makers. In this instance it would be Cally Palmer, NHS England’s National Cancer Director or David Fitzgerald, National Cancer Programme Director. Then other key stakeholders which would include other members of staff at NHS England. Given that the area for influence is delivery of services, then the doctors, nurses and allied healthcare professionals who are responsible for the delivery of these services must also be included. Finally, the estimated 100,000 strong community of families affected by a brain tumour will also be vital to the success or failure of this strategy.

In regard to the relational aspects of this strategy, the benefits of access to the key decision makers directly has been previously demonstrated by Baroness Tessa Jowell. As such the charity should look not just at staff members to utilise their own connections but also at the wide range of those engaging with the organisation to exploit direct relationships with these key decision makers, both directly and indirectly. One example would be to scout for MPs, Lord and other notable figures who would naturally have more ready access to lead people at NHS England. This may include MPs who have been personally affected by the disease or feel a strong affinity to the cause. Key briefings of facts would need to be presented to these individuals to ensure the legitimacy of their request for direct meetings with decisions makers.

With the community building aspects of this there is room to build real and significant mass participation to ensure that the message is heard by the right people. If people want to see the model implemented then the community voice can be used to highlight this to MPs, who will again have more readily available access to leading figures at NHS England. This could be done through template emails that highlight the need for this model to be implemented, why it is important, and the difference it will make to people’s experiences. This email would then be supplemented with a request to contact NHS England and ask them to examine the case for change. One example is the Airport Operators Association who targeted MPs online to lower the rate of Air Passenger Duty. There were over 200,000 emails sent to MPs which led to a tax cut of over £200m when two APD bands were abolished. ²¹

As has previously been examined there is the need for the persuasional aspects of this strategy to be consultative, and so part of a two-way dialogue. The consultation for the NHS long term plan has now closed and so is no longer pertinent to this strategy. However, once it is published it may enter into further conversations about its implementation. In addition there are, at the time of writing, 16 open consultations on the NHS England website[22], demonstrating that as a publicly funded body it is open to dialogue. The Brain Tumour Charity should monitor the publication of the NHS long term plan and ensure that when opportunities present themselves it has a strong body of evidence to feed into future consultations, meetings or discussions to ensure the change they need.

Recommending one method only could potentially lead to missed opportunities to influence outcomes. The Brain Tumour Charity may also not have the resources necessary to capitalise on various opportunities that present themselves, but this gives them the opportunity to be a good combination or both pro-active and reactive.

Combining these three approaches you create a stronger likelihood of success and enhance the possibility of creating real change for brain tumour patients, improving their hospital experience significantly.

Supporting Analysis

Given the real-world applicability of the report and strategy, a SWOT analysis is the primary source of strategic analysis for this work, as it can clearly demonstrate a clear landscape in which the organisation operates and how it can best utilise its strengths and minimise its weaknesses to achieve its aims. This allowed for critical and original thinking in applying this to the work of The Brain Tumour Charity.

In conducting a SWOT analysis of the various strategies and measures it was not enough to simply seek those methods that had more cases for strength and opportunity, but rather apply some critical analysis of and weight the findings. This means that one area may have more strengths, but they may not carry the same weight as another method where the strengths are far more mission critical to the success or failure of the strategy.

As the chosen area for improvement was centred around the improvement of patient experience in hospitals for brain tumour patients, it was important to identify ways in which hospital experience is measured and explore which method allows the organisation to make the strongest case. Although the NCPES was a clear measure of success and evidence base, there was still value in analysing its effectiveness and limitations.

In addition to this it is important to conduct a wide review of available literature in regard to various public affairs strategies and mapping those against the various levers and pullies available to help influence policy in this area. Given the origins of public affairs within public relations it is important to look at several relevant theories from this discipline where they are applicable to the public affairs work.

Measures and evidence

The strengths of NCPES are that it is a national survey and that its very purpose is to help highlight where improvements could be made within the NHS. It is recognised by those The Brain Tumour Charity are trying to influence as a legitimate methodology that provides high quality data as is evidenced by NHS England’s commitment in 2016 roll this out annually. The NCPES allows an organisation to rank the diseases next to one another to compare overall relative performance.[23] By doing this first it allowed verification that brain tumours perform relatively badly compared to other disease areas. To help build a stronger case for change, the results were not just examined from one year, but rather two and so 2016 and 2017, as the two latest years available, were selected. A full breakdown of the data is available in Appendix One.

It also presents considerable weaknesses as the survey methodology is far from perfect. Firstly, it is based on samples of patients who are discharged between 1^st April and 30^th June. As such it only accounts for a percentage of all patients. Further to this, the number of patients totals only 381 in 2016 and 389 in 2017, compared to breast cancer that has over 14,000 respondents to this survey in both 2016 and 2017.[24] [25] The smaller the numbers, the more liable they are to being questionable conclusions drawn from them as their statistical power is less significant.

In addition to this the NCPES survey aggregates different diseases together and so does not compare individual diseases with individual diseases, and indeed the brain tumour patient data is collated with tumours of the Central Nervous System tumours. So the data is not purely analysing the data of brain tumour patients.

The opportunities presented by utilising the NCPES however is that by being conducted by NHS England, it is naturally endorsed by them as legitimate and meaningful. In 2015 NHS England published a strategy entitled Achieving World Class Cancer Outcomes. When NHS England reviewed progress one year later it specifically stated that it would continue to commission the NCPES annually for the strategy. By having this endorsement of the survey it will mean that that data is widely accepted and endorsed by the key target audience.[26]

The NCPES is not without threats though, and the most significant is its likelihood to be continued.  Jim Shannon MP raised a question in the House of Commons regarding its continuity following the implementation of GDPR legislation. The Parliamentary Under-Secretary of State for Health, Steve Brine MP, responded that it would continue to 2018-19 and whilst reiterating his commitment to it said nothing further in regard to the same survey continuing beyond this.[27]

Overall the NCPES represented a robust method of measurement and evidence base as the threat to this survey is minimal. There is also real strength in using the data from a survey widely accepted and endorsed by NHS England to drive our behaviour. It provides more credibility with our key stakeholders and is far more likely to be listened to as a legitimate area for change as a result.

Public affairs strategies

In selecting the relevant strategy, it would not be appropriate to run through in detail all of the public affairs strategies that could have been considered for this report, but rather the select few that are detailed in the report itself and how those conclusions were drawn.

A relational strategy seeks to identify the key stakeholders and build strong relationships with those individuals. A relationship in this context is built on four things comfort, trust, commitment and investment.[28] You then use those relationships to drive change, or manage an issue, towards a positive outcome for that organisation.[29]

When looking at this method it is clear that the strengths lay in the fact that it is not as resource intensive as other methods. If you can identify the right individuals and gain access to them then you have a good chance of presenting your case and it being heard. It also has the advantage that you do not have to, though you could and arguably should, communicate beyond these select stakeholders involved in this process.

With this strategy an organisation needs someone who can open the right doors for them, which presents a weakness and can be difficult to find. The Brain Tumour Charity is small with an annual income of around £10m and a staff of around 100.[30] It does not possess the resources of some other organisations. Even with a wider community of those affected around them, it will still provide a challenge to access the right people.

The opportunities are that it allows for the establishment of trust and loyalty to the cause. This means that if they were able to establish The Brain Tumour Charity as a reputable organisation that only presented reasoned and well thought through cases for change, they may well be able to continue to exploit the relationship for other issues of change that may benefit the wider brain tumour community.

Reputational damage is a real threat here as if it is seen that one organisation is getting undue influence over how resources are allocated then that may harm all stakeholders involved. It may also prevent the organisation from using similar means in the future as all parties may feel that further risk of damage is too risky. There is also an argument to be made that if this does not work, the other, more public methods may lose their impetus as evidence bases have already been examined carefully by the decision makers.

Community building is about creating a broader sense of community and about using technology to empower community to take direct action in support of an organisation or movement.[31] There are different definitions of community and that has changed over time, especially with the emergence of new technologies. However, ultimately community building does provide a framework that can be used positively for social movements or causes such as this.[32]

This approach for an organisation with a community in the hundreds of thousands is an appealing prospect and carried lots of strengths. NHS England is a publicly funded body and is accountable to ministers in an elected Government. By harnessing the power of a broad electorate, you are holding public institutions to account of the people they represent.

The obstacles are that it is difficult to mobilise a community of that size. The organisation would need a clear plan and structure that is simple to use and execute for the organisation and for community itself. All of this takes time and resource to fully understand how to approach this and may require a considerable testing phase, as the charity would need to see what messages resonated with the community and what did not.

A consultative, two-way approach highlights the opportunities with this strategy, which would be the best way for it to be implemented. It presents the organisation with the chance to engage the community in its work beyond just this one issue. Once the charity has established the precedent of being a group that works with a broad section of the community, they are more likely to be able to utilise it for further influencing down the line.

As a potential threat to the strategy it removes itself one stage from the key stakeholders you are trying to influence, adding an extra layer of complication. In this case it would be those with access to the key stakeholders more readily, so MPs and members of the House of Lords. Though by asking people to communicate with them rather than just communicating directly to the stakeholders themselves it runs the risk of diluting or miscommunicating the message you are trying to convey and  therefore increasing the chance of failure.

A strategy focused on persuading is something that is as old as PR itself, and one of its pioneers Edward Bernays saw this evolve over time and how he saw the power of influencing key individuals to help make a bigger change through society.[33] In context this approach is specifically looking at agenda-setting as the outlet for communications. This essentially means looking to engage the attention of those in a position to improve the experience of brain tumour patients.[34]

The strengths of a persuasion strategy are that it is engaging in a dialogical relationship where the other group are potentially ready to hear feedback on issues of importance. This means that they are more likely to have methods and ways of working that will use that feedback to impact the work it is currently undertaking.

By having to wait for an opportunity you are highlighting the weaknesses of this strategy where you either have to participate in a process that is open, which means that you have to wait for that opportunity to present itself, or you have to create the opportunity which can be very difficult and perhaps lends itself more to a relational strategy.

When an organisation does participate in this process however it can help demonstrate that it is engaging in a meaningful way with a process that exists and operating in a two way dialogue and emphasises the opportunities it offers. This means the reputational risk from engaging in a process is low, as the feedback is being sought.

Waiting for an opportunity is risky and shows the threats this strategy represents as the organisation could be seen as not fulfilling a primary function that it was established to do. If this were the case there is a reputational risk and the possibility that the community that fund the work of the organisation do not see it as worthy of future funding and potentially move funding to other organisations in the sector.

Overall, reaching the conclusion to adopt versions of all three theories was clear, they all present different strengths, weaknesses, opportunities and threats. Despite, and because of, this they are legitimate outlets for change in a charity or advocacy organisation and by building the right strategy around these three you will be left with a strong practical action.

Ethical considerations

Ethical frameworks were also be considered and so it was important to review the Chartered Institute for Public Relations (CIPR) code of conduct to ensure that nothing within the recommendations violates this code. When reviewing the code, there was nothing in either strategy or the application of the strategy that would violate this code.[35] It would be important for The Brain Tumour Charity to monitor its staff carefully to ensure that none of them attempted to unduly influence civil servants.

There are also wider ethical implications to consider, namely that by pursuing a strategy to improve the experience of brain tumour patients in England, the charity are potentially impacting negatively on other disease areas if resources are moved to support this initiative. Whilst this may be true, it is also the case that The Brain Tumour Charity exists to represent those affected by brain tumours and not other diseases. NHS England itself arguably has a responsibility to balance the different disease areas and to ensure that there is not one benefitting at the expense of others. There is a civil service code of conduct that promotes objectivity as part of its framework.[36]

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Appendix One

This table shows the positive value scores for the National Cancer Patient Experience survey for the years covering 2016 and 2017. It compares the scores of those diagnosed with a brain tumour to averages against all other cancer types.

The data is taken from the tumour scores tab in the national results for both years. ^{7 8}

		2016	Average	Difference for brain tumours to average	2017	Average	Difference for brain tumours to average
Q1	Before you were told you needed to go to hospital about cancer, how many times did you see your GP (family doctor) about the health problem caused by cancer?	63.0%	76.7%	-13.7%	68.0%	76.9%	-8.9%
Q2	How do you feel about the length of time you had to wait before your first appointment with a hospital doctor?	79.2%	83.3%	-4.1%	81.5%	84.2%	-2.7%
Q3	How long was it from the time you first thought something might be wrong with you until you first saw a GP or other doctor?	n.a.			n.a
Q4	In the last 12 months have you had diagnostic test(s) for cancer such as an endoscopy, biopsy, mammogram, or scan at one of the hospitals named in the covering letter?	n.a.			n.a
Q5	Beforehand, did you have all the information you needed about your test?	90.3%	94.3%	-4%	94.7%	94.5%	+0.2%
Q6	Overall, how did you feel about the length of time you had to wait for your test to be done?	80.9%	87.5%	-6.6%	85.6%	88.2%	-2.6%
Q7	Were the results of the test explained in a way you could understand?	69.6%	79.1%	-9.5%	76.8%	79.5%	-2.7%
Q8	When you were first told that you had cancer, had you been told you could bring a family member or friend with you?	82.7%	75.9%	+6.8%	82.8%	77.2%	+5.6%
Q9	How do you feel about the way you were told you had cancer?	73.5%	84.2%	-10.7%	79.5%	84.7%	-5.2%
Q10	Did you understand the explanation of what was wrong with you?	62.8%	73.2%	-10.4%	65.3%	73.3%	-8.0%
Q11	When you were told you had cancer, were you given written information about the type of cancer you had?	62.7%	72.4%	-9.7%	64.8%	73.3%	-8.5%
Q12	Before your cancer treatment started, were your treatment options explained to you?	77.9%	82.6%	-4.7%	81.4%	82.9%	-1.5%
Q13	Were the possible side effects of treatment(s) explained in a way you could understand?	72.1%	72.4%	-0.3%	75.0%	73.2%	+1.8%
Q14	Were you offered practical advice and support in dealing with the side effects of your treatment(s)?	61.3%	65.8%	-4.5%	65.4%	66.9%	-1.5%
Q15	Before you started your treatment(s), were you also told about any side effects of the treatment that could affect you in the future rather than straight away?	55.3%	54.5%	+0.8%	54.8%	55.5%	-0.7%
Q16	Were you involved as much as you wanted to be in decisions about your care and treatment?	73.1%	77.8%	-4.7%	75.3%	78.5%	-3.2%
Q17	Were you given the name of a Clinical Nurse Specialist who would support you through your treatment?	94.8%	90.3%	+4.5%	95.7%	91.3%	+4.4%
Q18	How easy or difficult has it been for you to contact your Clinical Nurse Specialist?	81.7%	86.3%	-4.6%	85.2%	86.3%	-1.1%
Q19	When you have had important questions to ask your Clinical Nurse Specialist, how often have you got answers you could understand?	83.1%	88.4%	-5.3%	87.3%	88.0%	-0.7%
Q20	Did hospital staff give you information about support or self-help groups for people with cancer?	84.2%	83.9%	+0.3%	87.7%	85.8%	+1.9%
Q21	Did hospital staff discuss with you or give you information about the impact cancer could have on your day to day activities (for example, your work life or education)?	80.8%	81.2%	-0.4	82.1%	82.5%	-0.4%
Q22	Did hospital staff give you information about how to get financial help or any benefits you might be entitled to?	67.1%	56.4%	+10.7%	73.6%	58.2%	+15.4%
Q23	Did hospital staff tell you that you could get free prescriptions?	71.3%	80.5%	-9.2%	78.2%	81.3%	-3.1%
Q24	During the last 12 months, have you had an operation (such as removal of a tumour or lump) at one of the hospitals named in the covering letter?	n.a.			n.a
Q25	Beforehand, did you have all the information you needed about your operation?	93.0%	95.7%	-2.7%	93.2%	96.0%	-2.8%
Q26	After the operation, did a member of staff explain how it had gone in a way you could understand?	68.0%	78.8%	-10.8%	75.9%	79.0%	-3.1%
Q27	While you were in hospital did the doctors and nurses ask you what name you prefer to be called by?	n.a.			n.a
Q28	Did groups of doctors and nurses talk in front of you as if you weren’t there?	73.6%	81.9%	-8.3%	75.1%	82.5%	-7.4%
Q29	Did you have confidence and trust in the doctors treating you?	78.7%	84.7%	-6%	83.6%	85.1%	-1.5%
Q30	If your family or someone else close to you wanted to talk to a doctor, were they able to?	61.3%	73.0%	-11.7%	67.3%	73.4%	-6.1%
Q31	Did you have confidence and trust in the ward nurses treating you?	66.0%	74.1%	-8.1%	71.3%	75.5%	-4.2%
Q32	In your opinion, were there enough nurses on duty to care for you in hospital?	58.9%	66.7%	-7.8%	63.7%	66.3%	-2.7%
Q33	While you were in hospital did the doctors and nurses ask you what name you prefer to be called by?	64.5%	67.7%	-3.2%	67.5%	68.7%	-1.2%
Q34	Were you given enough privacy when discussing your condition or treatment?	76.4%	85.3%	-8.9%	81.0%	85.7%	-4.7%
Q35	During your hospital visit, did you find someone on the hospital staff to talk to about your worries and fears?	37.7%	52.0%	-14.3%	45.7%	52.5%	-6.8%
Q36	Do you think the hospital staff did everything they could to help control your pain?	78.5%	84.0%	-5.5%	84.6%	84.3%	+0.3%
Q37	Overall, did you feel you were treated with respect and dignity while you were in the hospital?	79.2%	88.0%	-8.8%	84.5%	88.8%	-4.3%
Q38	Were you given clear written information about what you should or should not do after leaving hospital?	76.0%	85.6%	-9.6%	78.9%	86.1%	-7.2%
Q39	Did hospital staff tell you who to contact if you were worried about your condition or treatment after you left hospital?	91.0%	93.9%	-2.9%	92.5%	94.2%	-1.7%
Q40	During the last 12 months, have you been treated as an outpatient or day case for cancer care at one of the hospitals named in the covering letter?	n.a.			n.a
Q41	While you were being treated as an outpatient or day case, did you find someone on the hospital staff to talk to about your worries and fears?	63.1%	70.5%	-7.4%	67.0%	70.8%	-3.8%
Q42	The last time you had an outpatients appointment with a cancer doctor, did they have the right documents, such as medical notes, x-rays and test results?	94.8%	95.7%	-0.9%	96.6%	95.9%	+0.7%
Q43	During the last 12 months, have you had radiotherapy at any of the hospitals named in the covering letter?	n.a.			n.a
Q44	Beforehand, did you have all of the information you needed about your radiotherapy treatment?	85.5%	86.1%	-0.6%	91.4%	86.5%	+4.9%
Q45	Once you started your treatment, were you given enough information about whether your radiotherapy was working in a way you could understand?	57.6%	59.7%	-2.1%	59.1%	59.5%	-0.4%
Q46	During the last 12 months, have you had chemotherapy at any of the hospitals named in the covering letter?	n.a.			n.a
Q47	Beforehand, did you have all of the information you needed about your chemotherapy treatment?	80.2%	83.9%	-3.7%	83.0%	84.2%	-1.2%
Q48	Once you started your treatment, were you given enough information about whether your chemotherapy was working in a way you could understand?	59.3%	67.3%	-8%	63.4%	68.0%	-4.6%
Q49	Did the doctors or nurses give your family or someone close to you all the information they needed to help care for you at home?	48.8%	58.0%	-9.2%	56.7%	59.3%	-2.6%
Q50	During your cancer treatment, were you given enough care and support from health or social services (for example, district nurses, home helps or physiotherapists)?	42.2%	53.1%	-10.9%	48.9%	53.3%	-4.4%
Q51	Once your cancer treatment finished, were you given enough care and support from health or social services (for example, district nurses, home helps or physiotherapists)?	41.3%	44.7%	-3.4%	44.0%	45.1%	-1.1%
Q52	As far as you know, was your GP given enough information about your condition and the treatment you had at the hospital?	88.5%	95.3%	-6.8%	94.3%	95.3%	-1%
Q53	Do you think the GPs and nurses at your general practice did everything they could to support you while you were having cancer treatment?	51.4%	61.6%	-10.2%	52.2%	60.4%	-8.2%
Q54	Did the different people treating and caring for you (such as GP, hospital doctors, hospital nurses, specialist nurses, community nurses) work well together to give you the best possible care?	43.3%	61.2%	-17.9%	52.5%	61.6%	-9.1%
Q55	Have you been given a care plan?	32.1%	33.3%	-1.2%	34.7%	34.9%	-0.2%
Q56	Overall, how would you rate the administration of your care (getting letters at the right time, doctors having the right notes/tests results, etc.)?	81.6%	89.3%	-7.7%	84.6%	89.6%	-5.0%
Q57	Overall, how do you feel about the length of time you had to wait when attending clinics and appointments for your cancer treatment?	61.1%	67.4%	-6.3%	67.7%	69.0%	-1.3%
Q58	Since your diagnosis, has anyone discussed with you whether you would like to take part in cancer research?	24.1%	28.5%	-4.4%	33.4%	30.8%	+2.6%
Q59	Overall, how would you rate your care?	8.35			8.52

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[1] (NHS England, n.d.)

[2] (Quality Health, n.d.)

[3] (Quality Health, n.d.)

[4] (The Brain Tumour Charity, 2018)

[5] (Conor McGrath, 2010)

[6] (Davidson, 2014)

[7] (Getz, 2002)

[8] (Yaxley, 2013)

[9] (Stephen J Price, 2013)

[10] (Somerville, 2011)

[11] (Ellwood Attfield, 2007)

[12] (Jackson, 2010)

[13] (Baroness Tessa Jowell, 2018)

[14] (O’Shaughnessy, Lord James, 2018)

[15] (Daily Mail Reporter, 2018)

[16] (Parliament.uk, 2018)

[17] (The Brain Tumour Charity, n.d.)

[18] (Task and Finish Working Group on Brain Tumour Research, 2018)

[19] (NHS England, 2018)

[20] (Miller, 2018)

[21] (Zetter, 2014)

[22] (NHS England, n.d.)

[23] (NHS England, n.d.)

[24] (Quality Health, n.d.)

[25] (Quality Health, n.d.)

[26] (NHS England, 2016)

[27] (Hansard, 2018)

[28] (Bruning, 1998)

[29] (Yang, 2017)

[30] (The Charity Commission, n.d.)

[31] (Lee, 2018)

[32] (Hallahan, 2004)

[33] (Smith, 2001)

[34] (Gilliam Jr, 2004)

[35] (Chartered Institute for Public Relations, 2012)

[36] (Civil Service, 2015)