Patient support: Roy Castle Lung Cancer Foundation

pharmaphorum spoke to Lorraine Dallas, director of information and support, about how the charity is helping those with lung cancer and their families in its 25th anniversary year.

Tell us about your charity; what are your long-term goals?

The Roy Castle Lung Cancer Foundation is the UK’s only lung cancer charity.

It was set up in 1990 and later named after the much-loved British TV presenter Roy Castle, who raised over a million pounds for the charity in the months before his death.

Roy, who was also a renowned trumpet player, had never smoked and believed his lung cancer was caused through passive smoking at the jazz clubs he played at in his youth.

Today, the charity continues his legacy by focusing on saving lives and supporting people living with lung cancer.

It saves lives through funding research, helping people to quit smoking and encouraging young people not to start smoking.

It supports people living with lung cancer by providing information materials to the NHS, running lung cancer support groups across the UK, supporting nurses, providing patient relief grants and offering telephone and online support.

The Foundation has been in existence for 25 years this year – what developments have there been during that time in terms of research and treatments? How has your organisation changed in that time?

The main development has been in treatments.

Historically, lung cancer patients were faced with few options when it came to their treatment but over the past 10 years many have benefited from new targeted therapies, such as gefitinib, erlotinib, afatinib and crizotinib.

Although not cures, these treatments allow people to live for longer with the disease and have fewer side effects than traditional treatments.

As your readers will be aware, 25 years is not a long time in the field of research and our work continues in this area. It is looking at how to diagnose lung cancer at an early stage when it can still be cured and also how we can improve the experiences of patients.

The charity had very humble beginnings, originally being launched from the Liverpool hospital office of renowned thoracic surgeon, Professor Ray Donnelly.

Professor Donnelly was so appalled by the terrible survival rates of lung cancer patients and the lack of support that he decided to start a charity to attempt to reverse their fortunes.

Since then the charity, which now has almost 100 staff, has funded more than £20 million of research projects across the UK, supported hundreds of thousands of patients and helped many more to quit smoking.

What are your goals in 2015?

Our goals remain the same – saving lives and supporting people.

To achieve this we will: fund an additional six research projects into early detection and patient experience; improve access to high quality treatments – the changes to the Cancer Drugs Fund are a cause for concern; help more people by increasing distribution of lung cancer information materials by 15 per cent; stop children from smoking through our award-winning anti-tobacco film competition, Cut Films, plus give a voice to lung cancer patients, through means such as featuring in the media to sitting on a group to improve services in the NHS.

What are the greatest challenges in research into a cure for lung cancer today?

Our recent report branded the lack of research into the UK’s biggest cancer killer as a national scandal.

The Roy Castle Lung Cancer Foundation discovered that lung cancer has the lowest share of funding of the most common cancers despite having the highest death rate.

Most recent figures show that lung cancer received only £329 for research for every death compared to breast cancer, which received £3,540, and leukaemia, which received £7,040.

This equates to only 6 per cent, the lowest share of funding of the big four cancers – breast, lung, prostate and bowel.

The lack of research is blamed on the stigma associated with smoking and the sense of pessimism caused by its poor prognosis.

However, the report does identify some cause for optimism with advancements in new treatments for lung cancer and more charities, including ours, focusing on funding lung cancer research.

What kinds of support are needed by those with lung cancer and their families?

For many of those we speak to on our helpline or in our forums, diagnosis and an early death are too closely linked. One of our forum members captured this in her question, “Should I bother buying a big box of cornflakes?”

People need support to understand their treatment options, to sort out the choices they have to make and to cope with the impact on the family.

One very practical way we help is by providing grants to people for whom diagnosis creates a financial crisis. We also offer hope, for example by supporting groups that allow patients and carers who are in similar situations.

What can the NHS do to improve diagnosis, treatment and care for those with lung cancer?

One of the biggest challenges is the majority of people are not diagnosed with lung cancer until it has spread and cannot be cured.

A high proportion of people, around 38 per cent, are diagnosed at Accident & Emergency, when they are extremely unwell and their outcomes are much poorer than those diagnosed via their GP.

We need wider public awareness of the symptoms of lung cancer and to ensure GPs refer those at risk to secondary care quickly.

The ‘Be Clear on Cancer’ campaign in 2013 produced positive results and we need to build on this in the future.

Our online lung cancer map shows that treatment varies across the UK. We need to understand why some hospitals have better outcomes than others, share good practice and ensure that we are doing all that we can to offer the best treatment options for people across the country.

Finally, access to a Lung Cancer Nurse Specialist has a positive impact on patients’ experience, regardless of treatment or prognosis, so adequate resourcing is important.

What can other stakeholders, such as the pharmaceutical industry, do to help?

The support of the pharmaceutical industry is vital; to identify and bring appropriate therapies to the market; to support awareness-raising and to work with the NHS and voluntary organisations to improve the services we provide for people affected by lung cancer.

The Roy Castle Lung Cancer Foundation is happy to hear from anyone who is interested in partnerships, particularly around lung cancer awareness or patient support.

What is the focus of your latest awareness/fundraising campaigns?

We are currently working on an exciting film project to raise awareness of the symptoms of lung cancer.

The details are top secret but I can tell you it involves famous movie scenes, modelling clay models and a lot of surprises.

We are looking at partners for this project, so if anyone is interested then please get in touch and we’ll reveal the secret.

About the interviewee:

Lorraine Dallas is director of information & support at Roy Castle Lung Cancer Foundation, where she has worked since June 2012. She leads the team offering services to those with lung cancer: including information, support via groups, helpline and new media, plus grants. The team also works to raise awareness of lung cancer at policy and community levels. Previously she was the head of Scotland for Breast Cancer Care. She has worked in the charity sector for almost 20 years and has represented patient interest working with the UK Lung Cancer Coalition, Scottish Cancer Coalition and policy teams.

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