Monthly Archives: February 2015

Make or break time for banks to support people affected by cancer

The financial impact of cancer is severe. We know that cancer’s hidden ‘price tag’ for four out of five (83%) people is on average £570 a month and for 30 per cent of people, rises to £860 a month due to loss of income.[1] Considering the range of existing financial commitments that people are likely to have, for example mortgages, credit cards and loans that were manageable pre-diagnosis, it stands to reason that the unexpected financial impact of cancer could be the shock that makes people vulnerable to financial difficulty.

That’s why it is great news that two important pieces of work have been launched this week that should significantly increase awareness of these issues and improve the support available to financial services customers affected by cancer. On Monday the Financial Conduct Authority (FCA) released the findings of its groundbreaking work on consumer vulnerability and outlined the regulatory approach to dealing with the issues it raises. This is a call to action that offers the financial services industry and the voluntary sector a real opportunity to work together to cut through the oft-cited challenges of legal and regulatory compliance and address the delicate balance of consumer protection and consumer empowerment. Macmillan Cancer Support is pleased to have worked closely with the FCA to inform and support their work and we welcome the report.

Meanwhile, the British Bankers Association (BBA) has published best practice guidance for banks on how to improve the support they offer to their customers with cancer and other long-term conditions. The guidance addresses the changes to staffing, systems, products and services that banks should consider in developing effective policies to achieve this. Macmillan has worked in partnership with the BBA and the Royal College of Psychiatrists as well as consulting with The Stroke Association, to ensure that this guidance accurately reflects the financial support needs of people experiencing the financial impact of a long-term condition. It builds on Macmillan’s innovative Counting on your Support report launched in May 2013 with the backing of over 2,000 people affected by cancer, which set out nine recommendations to the banking sector for how it could improve the service it provides to customers with cancer.

Like many other consumers in potentially vulnerable circumstances, people affected by cancer aren’t ‘bad’ customers. In fact we know that many think about how they will manage the impact on their finances moments after diagnosis and try develop the best strategies they can for doing so. However, they face the multiple challenges of navigating a system that’s not designed for their circumstances, frequently with an incomplete understanding of what their future journey and financial needs could look like, at a time when they might be physically, emotionally or psychologically vulnerable. We know that early intervention with high quality information and support, such as that provided by Macmillan and other organisations, can make a huge difference to improving financial outcomes for someone with a cancer diagnosis. However, at present only 26% of people diagnosed with cancer receive any financial information or support despite 71% saying that they would like to have it. [2]

It’s clear that everyone has a part to play in enabling people with long-term conditions to take control and make good, well-informed financial decisions so that they can continue to manage their finances as ‘responsible’ customers. However, the financial services industry’s current contribution to this is not proportionate to its increasing role as a social utility that forms the backbone of how we transact our daily lives as consumers. People living with cancer who feel isolated tell us that their financial concerns play an important or critical role in this feeling. Despite the industry’s unrivalled ability to reach out and play a significant part in stopping cancer from being the loneliest place, fewer than one in three of the small number of people with cancer who approached their bank after their diagnosis (4%) received any support. This reinforces the perception that banks can’t or won’t help those who take the courageous step of disclosing the intensely personal details of their illness and that sometimes they are even penalised for doing so.

Worse still, at Macmillan we hear from people living with cancer who ‘self-exclude’ from the financial system because of negative experiences of seeking help and the feeling that financial providers have let them down when they were most vulnerable. They restrict their engagement with the financial services industry to the bare minimum required for managing day-to-day finances. These people are not only lost to the financial services industry but also, as noted in the FCA report, there is a cost to everyone: “Marginalisation in financial services can lead to marginalisation in other essential services and have a seriously detrimental effect. Society as a whole loses out, both in terms of cost and cohesion.”[3] Acting on the FCA report and implementing the BBA guidance must be part of the industry’s vital first steps towards changing this system failure.

One of the key intended outcomes of the BBA guidance is to ensure that frontline banking staff have the knowledge and skills that will better equip them to deal with customers with long-term conditions confidently and appropriately and most importantly, refer them to the right sources of specialised support. This is essential as we know that the first contact with a financial services provider can be the make or break point that determines whether or not a customer affected by cancer gets the support that they need and in turn, is able to secure the best possible financial outcomes.

The FCA paper and the BBA guidance highlight two key messages. Firstly, addressing the needs of customers with long-term conditions and other potential vulnerabilities is unquestionably the socially responsible thing to do – a key test of conscience for the industry that should be integral to the core values of financial firms. Secondly, standing by customers facing temporarily challenging circumstances and supporting them to remain financially well makes commercial sense in a range of ways including reputational benefits, customer loyalty and staff morale, as well as potential cost savings. We therefore commend the FCA and the BBA for their work and support the call to action for the financial services industry to step up and play its part in addressing issues of consumer vulnerability.

Leonora Miles, Policy Adviser –  Financial Services, Macmillan Cancer Support (lmiles@macmillan.org.uk)

[1] Macmillan’s Cancer’s Hidden Price Tag research can be found via the following link: macmillan.org.uk/Documents/GetInvolved/Campaigns/Costofcancer/Cancers-Hidden-Price-Tag-report-England.pdf

[2] Unless otherwise stated, figures and qualitative insight are based on: Experiences of Interacting with Banks when Diagnosed with Cancer, YouGov, 2013. Online focus groups and telephone interviews with 36 people from the UK with a cancer diagnosis in the last 18 months, who had a banking experience in the last 12 months. Participants were recruited from YouGov’s online panel and a database of Macmillan Support Line callers. Fieldwork was conducted in October 2013. Information and Support, YouGov 2013.Online survey of 3,007 UK adults who have or have had cancer. Fieldwork was undertaken between 5 and 27 December 2013. Survey data has been weighted to be representative of the wider cancer population (cancer prevalence) in the UK by age, gender, nation and cancer type

[3] Occasional Paper No.8: Consumer Vulnerability, Financial Conduct Authority, February 2015, p.75

What can we achieve by 2020?

It’s been a while since we have had a new cancer plan, so it’s great that NHS England recently announced a new independent taskforce to develop a five-year action plan for cancer services, to improve survival rates and save thousands of lives. A plan might not sound that exciting, but they are vital for driving where the NHS and beyond need to change in order to improve outcomes for people affected by cancer. A new plan can only be great news for the 2 million people currently living with cancer in England[i] and the 1.5 million people who we estimate will be diagnosed over the next five years[ii].

So what does history tell us we can expect from this plan? The very first cancer plan was in 2000, overseen by the then cancer tsar Prof Mike Richards, and in response to England’s dire cancer survival rates and poor patient care. It is believed to have succeeded in ensuring the specialisation of cancer services improving patient care, as well as bringing down waiting times. A 2007 strategy introduced the concept of survivorship, and recognised the importance of supporting people after treatment had finished, initiating another shift in cancer care, with the result that there is now greater awareness of people’s needs post-treatment, and a growing range of support for them. The last edition, in 2011, well before the most recent changes to the NHS in England had taken place, placed the improvement of outcomes for people with cancer as its priority. Now the NHS has been reorganised, and more and more people are living longer with cancer, and rapid changes in technology are changing treatments, it is time that we have a new, ambitious plan that sets out the direction of travel for cancer services, with patients at the centre.

We hope this strategy or plan (call it what you wish) will strongly reflect the vision NHS England, Monitor, Public Health England  and others set out in the NHS Five Year Forward View, published last autumn. In that document Simon Stevens set out a vision of the NHS as a movement, where care is personalised and centred around the patient. Anyone who wants patients to be at the centre of the NHS couldn’t fail to be heartened by that document which seems to have been universally well received; the cancer plan is a chance to turn the NHS Five Year Forward View into action for people with cancer and their carers.

This new cancer strategy is being lead by a taskforce, chaired by Harpal Kumar, Chief Executive of Cancer Research UK. Juliet Bouverie, Director of Services and Influencing at Macmillan, also sits on the taskforce, along with a myriad of senior NHS figures and a patient representative. There is a tight timeframe to produce the strategy; a statement of intent will be published in March and the final document should be published in the summer. There is currently a call for evidence, open until the end of February, (go here to let the taskforce know your views) and the taskforce will also oversee a programme of workshops to inform an action plan, seeking views from people with cancer, carers, clinicians, industry, nurses, commissioners, and allied health professionals as well as charities.

Macmillan will be submitting views to the taskforce, and seeking views of people with cancer as we develop our ideas. We hope that the intentions of the NHS Five Year Forward View will be realised by the plan. It is obviously really important that the plan has people with cancer at its centre and ensures that all aspects of the patient pathway are covered, from prevention and early diagnosis, through treatment and post treatment support, to end of life and supporting carers. We’d also like to see a commitment to matching the best survival rates in Europe – given that England lags so poorly behind other countries this must certainly be a priority. Increasing incidence and survival will mean more people living longer with cancer so there also must be a focus on ensuring that people are supported post treatment and helped with getting their life back, be that going back to work, help with managing the long-term consequences of treatment or supported emotionally. The strategy should also ensure that older people are treated appropriately and not dismissed on account of their age. To make all this happen, the strategy also needs to set out how cancer services will be measured and held to account, and how we can use data to improve and evolve services.

If the cancer plan can put into reality the aspiration of the NHS Five Year Forward View to integrate services around  the patient, as well as taking steps to save 8000 lives as Stevens promised in the press release, that would mean cancer care has made huge steps since the first cancer plan in 2000. It would show that when the NHS comes together across organisational boundaries to create a strategic plan, significant changes to people’s outcomes and experiences can be made within a generation.

Laura Thomas – Policy Manager, Macmillan Cancer Support

[i] Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.  (Projections scenario 1), and Macmillan analysis based on extrapolation of 2010 and 2020 projections and distribution across the nations taken from Maddams J., Thames Cancer Registry, personal communication. See also Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547.

[ii] Incidence predictions are based on the assumption that age specific all cancer incidence rates remain constant at 2012 rates for the next few years (Mistry et al. 2011 state “there is projected to be almost no change in the overall incidence rates of cancer (for all cancers combined) in the 23-year period 2007–2030”). Predictions based on applying the UK 2012 incidence rates for 5 year age groups from:

to the ONS’s UK population projections (2012-based projections – Principal projection for the UK – Population by five year age groups and sex http://www.ons.gov.uk/ons/rel/npp/national-population-projections/2012-based-projections/rft-table-a2-1-principal-projection—uk-population-in-age-groups.xls).

Missed cancer waiting time target is a national disgrace

On Wednesday, it was revealed that the 62-day cancer waiting time target had once again been missed, with the publication of new statistics from NHS England.

This target sets out the time it should take for people with cancer to begin treatment following an urgent GP referral.  The latest figures show that 68 trusts in England have failed to meet the target, leaving more than 5,000 people with cancer waiting more than 62 days to start urgent treatment.  At Macmillan, we understand this is caused by reduced resources, leadership and capacity in the system, at a time when the number of people living with cancer has grown to over 2.5 million.

Yesterday’s figures are deeply concerning for two reasons.  First and foremost, it is about people’s lives.  Macmillan knows firsthand the anxiety that people and their loved ones experience, knowing that they urgently need life saving treatment, but the treatment is out of reach.

However, the figures are also of concern because they may reflect a broader lack of priority for cancer care in recent years. The figures announced yesterday for October to December 2014 mark a full year of the waiting time target being missed.  Alongside this, other cancer targets have also been missed – the two-week waiting time target to be seen by a specialist if you have breast cancer and the target for 99% of people to wait six weeks or less for a diagnostic test.  Together, these may point to an institutional complacency emblematic of a system that thinks cancer has been ‘fixed’, and focus and attention can now move on.

Cancer is not fixed.  Not when 1 in 4 people continue to be diagnosed in A&E, meaning they will be twice as likely to die within a year.  Not when people are shown a lack of compassion and dignity, being spoken to by healthcare professionals as if they’re not there and not having their treatments explained to them.  Not when less than a third of people are able to remain at home towards the end of their life, due to lack of social care support.  And not when our cancer survival rates are languishing below the average in Europe.

Macmillan is pleased to be engaging with the process to develop a new cancer strategy for England and we welcome the leadership from government and NHS-England to address these issues, including Simon Stevens establishing a waiting list taskforce.

However, we also need all political parties to make a firm commitment in their General Election manifestos to bring our cancer outcomes in line with the European best.  This will ensure the next government delivers the urgent action needed to address the national disgrace of targets for cancer treatment being missed.

Ellie Rose

Macmillan Cancer Support – Public Affairs Manager

@MacmillanPA – parliament@macmillan.org.uk

MPs debate cancer outcomes

There was a certain hush over the Macmillan Public Affairs team last Thursday as everyone plugged in their headphones to listen to MPs debate the crucially important topic of improving cancer outcomes. The debate was led by Chair of the All Party Parliamentary Group on Cancer, John Baron MP, and supported by a number of other cancer specific All Party Groups. Significantly, it was most likely the last opportunity before the General Election for MPs to speak with one voice on floor of the House about the importance of cancer outcomes.

We were delighted to hear a number of MPs reiterate our General Election calls during the debate – on delivering the best outcomes in Europe, ensuring that all cancer patients are treated with dignity and respect, and providing free social care at the end of life.

In his opening speech, John Baron (Conservative) set out the scale of the challenge as he highlighted the wide gap between cancer survival rates in the UK, and the best in Europe. Speaking on recent changes which will see CCGs held to account on improvements in one year survival rates, he called on the Minister “to ensure that NHS England uses those tools to full effect to deliver the best outcomes in Europe and, quite literally, to save tens of thousands of lives”. This was later echoed by former Care Minister, Paul Burstow (Lib Dem), who set out “why we need this ambition of going beyond just achieving the average survival rates in Europe to strive to become the best in Europe” and pointed to “better prevention, swifter diagnosis, better treatment and aftercare” as crucial components in achieving this.

Burstow also touched on another point Macmillan have been campaigning on for a number of years – free social care at the end of life. In response to comments from Grahame Morris (Labour), who highlighted that Government have previously said they saw much merit in the policy, Burstow confirmed that his position had not changed since he left Government – and that if anything, further evidence now made the case even stronger. On the subject of end of life care, we were also delighted to hear Morris call for 24/7 community care, and better information sharing – both of which are also essential to delivering the best end of life care.

But whilst the debate covered many of these important issues, it was Jack Lopresti’s (Conservative) moving account of his own cancer experience which brought the importance of improving cancer outcomes home. During his account he praised the “great medical support and care” he received from nurses and organisations like Macmillan, but highlighted the importance of good communication, as he described receiving a letter detailing a conversation with a consultant which had never taken place. Other members commended Lopresti for his bravery, including the Minister, Jane Ellison, who said that “nothing could more amply demonstrate the importance of putting cancer patients’ experience at the heart of the NHS”.

In their responses to the debate, Macmillan was pleased to hear both Minister and Shadow Minister reiterate the importance of improving cancer outcomes, and pay tribute to the work of All Party Groups and charities that have campaigned on these issues during this Parliament. It is now essential that this momentum is not lost – and that all parties ensure that improving cancer outcomes remains a priority both during the General Election, and beyond.

To find out how you can help to ensure that cancer is a priority in the manifestos of all the political parties, visit our website here.

 

Compassionate care and patient experience in the NHS: two years from the Francis Inquiry report

Today marks two years since the publication of the Francis Inquiry report into the causes of poor care at the Mid Staffordshire NHS Hospital Trust. The report highlighted incidents of severe neglect for many patients, including cancer patients.

The inquiry uncovered serious failures to treat patients with dignity and respect. It’s fair to say that the findings of the publication continue to reverberate today, prompting many organisations, like Macmillan, to work with the NHS to put ‘the patient’ at the centre of a new culture of care.

The voice and experience of the patient forms the backbone of the recommendations of the Francis Inquiry. This is natural territory for Macmillan, and so we facilitated a session which gave 200 patients and carers the opportunity to discuss directly with Department of Health officials what mattered to them most, and how this could translate into realising the vision of a new culture of care, defined and shaped by patient voices.

What are cancer patients saying about compassionate care two years after the Francis Inquiry?

It will come as no surprise that there was a fundamental agreement that ‘the basics’ matter: human kindness and respect are the foundations that allow a health service which is both compassionate and effective.

Giving NHS staff enough time to care for and listen to patients would bring about a much needed shift where patients are more than ‘just a number’, a ‘disease to be treated ‘ or ‘someone on a conveyor belt or on a production line’. In practice, this means that the ‘moments that matter’ to a patient (like making eye contact, like placing water within reach) become ‘always events’.

The patients at our event listed the following as working well in the NHS:

  •  Treatment and services. The treatment of cancer, the services and facilities have improved in the last few years. Developments in the effectiveness of cancer treatment, drugs, diagnostic tests and surgery have made them feel safer.
  •  Transparency. Efforts such as the national patient experience survey, individual trust surveys and the hospital inspection regime are progressive steps in hearing and acting on the voice of patients. The new models of accountability which represented patients’ views, such as Healthwatch, are also positive. However, there is a general feeling that more needs to, and can be, done.

The following were identified as working less well:

  •  Widespread variation in care. Experiences of care still seem to depend on the patient’s age (much older and much younger people did not get the best care), cancer type and location of the hospital.
  •  Unsupported staff. The low morale and frustration across the health service were cause of concern for patients. In their view, these issues led to overworked and stressed staff. Another obstacle NHS staff face is a lack of, or limited, training on delivering good user experience in hospitals.
  • Uncoordinated care, disjoined transition points and loss of trust. The numerous services cancer patients can come into contact with do not feel integrated and joined up. Instances such as notes going missing affect the trust and faith patients have in practitioners.
  • Acting on feedback. Questions were raised about listening to patients effectively and acting on feedback which led to tangible improvements.

 What else needs to be done?

Significant steps have been taken by the Government and across the NHS to drive improvements.

However, there is still much more room for improvements to address the issues highlighted above. The NHS is not able to do this alone – and nor is it expected to deal with the size of the challenge alone. As its NHS Constitution so eloquently declares, ‘the NHS belongs to the people’, and there is a wealth of organisations, from large charities to small community networks to individual patients, who all have the collective expertise, commitment and will to support the NHS.

We at Macmillan are eager to play our part, by providing practical and effective solutions (such as the Macmillan Values Based Standard©) to bring about long term meaningful change to the way the NHS delivers care. We also believe that national leadership is needed to drive improvements on patient care. As the general election is only three months away, we are urging all political parties to take concrete action and commit in their general election manifestos to make compassionate care and patient experience a priority.

Alexandra Cardenas – Senior Public Affairs Officer @MacmillanPA

Jagtar Dhanda – London Lead and Head of Inclusion @JagtarSDhanda