Meeting of the Parliament

Meeting date: Thursday, November 3, 2022

Official Report 1151KB pdf

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Cancer Card

The next item of business is a members’ business debate on motion S6M-04821, in the name of Miles Briggs, on Cancer Card. The debate will be concluded without any question being put. Members who wish to participate should press their request-to-speak buttons as soon as possible.

Motion debated,

That the Parliament acknowledges what it sees as the tremendous work by Jen Hardy in establishing Cancer Card in Scotland, which is an initiative that provides people with access to vital cancer support services and information regarding their diagnosis in one place; understands that, after her own incurable breast cancer diagnosis in 2017, Jen was struck by the realisation that there was no single place for her to obtain useful information related to her illness, which motivated her to establish Cancer Card; further understands that this community can help people diagnosed with cancer, including people in the Lothian region, to find the support that they require, minimising stress during an already highly stressful time; recognises that Cancer Card attained charity status in 2021; considers that it can play an integral role in securing relief and comfort to cancer patients, and welcomes the appointment of Ian Pirrie as Cancer Card’s first CEO.

12:56  

I start by thanking members for supporting my motion for debate today. I also want to invite members to attend the photo call that will take place on the garden lobby steps at 1.35, following the debate. I hope that members will be able to join us.

I think that we would all agree that one of the greatest honours that come with being an MSP is the opportunity that it presents to meet remarkable people. One such person is Jen Hardy, and I am delighted that she has joined us today in the public gallery, alongside Ian Pirrie, the new chief executive officer of Cancer Card.

I first met Jen Hardy in March 2018, when she successfully campaigned alongside women with incurable breast cancer and the Breast Cancer Now charity to help to deliver access to the secondary breast cancer drug Perjeta. I am pleased that the cabinet secretary said that those discussions continue, and I note that, yesterday, he engaged with the continuing campaigning work of Breast Cancer Now.

Jen was diagnosed with stage 4 incurable breast cancer on 18 October 2017, after having a CT scan to find out the cause of her paralysed vocal cord. While searching for cancer support, she noticed that there was no single place or online resource that listed the hundreds of different support services, support providers, information channels and free experiences that are available to people living with cancer, and their families.

It was that realisation that prompted Jen, who has an information technology background, to work to establish Cancer Card in order to create a single online point of access for anyone who is affected by cancer so that they can find the help and support that they need. Cancer Card, which was launched in May 2022, provides a detailed index of support services that are available, helping individuals navigate what can often be a complicated and complex world of cancer.

It is hard to believe that something like Cancer Card did not exist until now. I know that it is incredibly hard to have the difficult conversations with someone living with cancer about their treatment journey and, indeed, to ask the many personal questions that a wife, husband, mother, father, sister, brother, daughter, son or friend might want to ask. That is where Cancer Card is so wonderful: it recognises the questions and support that are involved in reaching more than just the person living with cancer but their families, friends, employers and professionals. It is available any time of day or night, when questions might be asked or answers or support might be sought. It also acts as a directory of key contacts for all United Kingdom cancer charities and support services.

One in two of us will develop cancer in our lifetimes. Over the past six years, in my time as co-chair of the Scottish Parliament’s cross-party group on cancer—alongside Jackie Baillie—one of the regular requests of many clinicians, charities and groups has been for access to the support services to be improved and made more readily available. That is what Cancer Card offers.

The significant impact of a cancer diagnosis on an individual’s life is immense, with the potential to render them feeling lost, frustrated, fatigued, isolated or financially disadvantaged when trying to obtain information of a non-medical but nonetheless essential nature. At a time when people living with cancer, and their families, need the most support, it can often be difficult to find the right information at the right time for the right person.

Cancer Card seeks to address that through the online support hub, where those affected by cancer find invaluable insights from the Cancer Card community and access to local and national cancer support charities and services, including financial help, exercise classes, counselling and local support networks. The advanced search and filtering options allow users to create a bespoke search based on their individual needs. That is very important. I ask those who have not had the opportunity to see cancercard.org.uk for themselves to visit it, please.

I pay tribute to and thank all the charities and organisations that provide information, help and advice to people and families living with cancer. We owe those organisations a huge debt of gratitude. The difference that they make to people’s lives, including those living with cancer, is significant across our country.

I believe that Cancer Card can and will elevate cancer support charities and services and help to promote their invaluable offering. There is no cost to users or charities for the services that are listed. That presents a great opportunity for local groups to highlight what is available in different localities across Scotland.

The Scottish Government is currently undertaking work on the new cancer strategy, which I welcome. That presents an opportunity to reset and reconsider how support and advice are provided in Scotland and across the United Kingdom, and especially to reconsider how, during and following the pandemic, access has shifted online. I hope that the new strategy can embrace Cancer Card and that the fresh new approach can provide the information and advice services that people living with cancer and their families and friends so desperately need and want to access.

I thank members for allowing this debate to take place, and I look forward to hearing the contributions to it.

13:01  

I congratulate Miles Briggs on securing debating time this afternoon.

We all know that cancer is one of the major causes of disease and death in Scotland, with more than 30,000 patients diagnosed and more than 16,000 people dying of cancer recorded every year. Sadly, half of us will be diagnosed with cancer at some stage in our lives.

Unfortunately, unprecedented challenges with the Covid-19 pandemic have had a significant impact on cancer treatment. The impacts range from temporary pauses in screening programmes to longer waits for CT scans and colonoscopies. That threatens the steady progress that has been made in cutting cancer mortality rates in recent years.

New research that was published in The Lancet Oncology on Monday showed that countries with cancer policies that are consistent over time are more successful in improving survival across a range of cancer types. Scotland has fared better than other UK nations, but it still lags behind countries such as Denmark, which has among the highest increases in survival rates after maintaining a cross-party consensus on policy and the level of investment required.

That said, I welcome the establishment of Cancer Card in Scotland and congratulate Jen Hardy on her tireless work in setting up that online hub after having been diagnosed with stage 4 incurable metastatic breast cancer in October 2017. Through her lived experience and by navigating the information and support available, she found that there was no all-encompassing hub to bring together the numerous cancer charities and support services that are out there. That gap is what Cancer Card seeks to fill, and does fill.

What I found particularly interesting in browsing the new Cancer Card website is how easy it is now to find the tailored support that is right for each individual, as Miles Briggs highlighted, depending on the type of cancer that the person or a loved one has, their location and their relationship with cancer. Being diagnosed with cancer is, understandably, a huge shock to most people, and easy access to the right resource will make an already highly stressful and worrying time a little less difficult. Videos and blogs from people who have survived cancer can also help to provide some reassurance.

In 2010, my twin sister had breast cancer that was so virulent that she was operated on within 72 hours of her initial diagnosis. Janis had radiotherapy and chemotherapy, and she has now been cancer free for more than 11 years. The big C, as John Wayne famously used to call it, need not be a terminal diagnosis if it is caught early and/or treated aggressively.

I also welcome Cancer Card’s vision of supporting everyone who is affected by cancer, with help being directed to not only the patients but their partners, family members, friends and, indeed, employers. I hope that the new directory will be of assistance to my constituents by signposting them to the numerous amazing local charities and support services that are available across Ayrshire and Arran. Those include Ayrshire Cancer Support, which is Ayrshire’s leading cancer charity. It provides practical help and emotional support to people who are affected by cancer, including transport and complementary therapies.

The same applies to Arran Cancer Support Trust, which supports cancer patients and their families with the unique challenges that island life can pose. Not only does the trust offer counselling and wellbeing support, but volunteers pick up Arranachs at Ardrossan harbour, take them to the mainland hospital and wait or come back to take them on the return ferry to Arran, where transport can also be arranged to and from the ferry terminal. I thank everyone who is involved in local charities for their efforts and indeed everyone in the third sector, which is a vitally important partner for the national health service in our efforts to combat cancer.

I have no doubt that Cancer Card will play a vital role in improving the access of patients, as well as family members and friends, to the many vital resources that are out there, signposting them to the local charity or support service that is best suited to their needs. I will certainly do my bit to make my constituents aware of the help that Cancer Card can offer.

Once again, I congratulate Jen Hardy on setting up Cancer Card and I congratulate Miles Briggs on bringing this important topic to the chamber.

13:05  

I also congratulate Miles Briggs on having secured this debate to celebrate the work of Cancer Card.

With one in two of us being diagnosed with cancer in our lifetime, not many of us can say that we have not been touched by cancer. Whether it is a personal story or that of family or friends, the experience is real and is often very difficult. A cancer diagnosis comes with a whirlwind of emotion. There is an overwhelming amount of information to take in at once, accompanied by worries about loved ones and concerns around finances—especially now, during the cost of living crisis. Of course, a cancer diagnosis also has an impact on work, because many people have to give up employment for a time.

Despite the support that is available, the landscape is new and it is very difficult to navigate for the person who has just had a diagnosis. That is where Cancer Card comes in. It is an online hub that brings together all the information that people need. I join others in congratulating Jen Hardy, Ian Pirrie and the team, because they have managed the quite remarkable task of pulling together all the information so that people can find out all that they need to know about receiving support once they have received their diagnosis. That helping hand is invaluable in making people feel less alone at such a hard time.

We are all aware of the pressures that are being faced by our health service, so the work of Cancer Card is needed now more than ever. Figures for the quarter ending 30 June 2022 show that performance against the 62-day cancer waiting times target was at its lowest point since records began, with just 76 per cent of patients starting treatment within that target time. It is a target that, regrettably, has never been met, so we need collectively to do more to deal with that.

We are also seeing the toll that lockdown has taken on early diagnosis of cancer, with more people presenting with late-stage cancers than were doing so before lockdown. It is against that backdrop that Cancer Card’s work truly shines. It is a light in the dark, offering advice and lived experience, as well as helping people and their families to navigate this new world. It also supports staff, who are stretched to the limit.

Cancer Card is not alone in carrying out that vital work. I want to recognise organisations such as Macmillan Cancer Support, which is there to assist people in whatever ways are necessary when their lives have been turned upside down, whether they are having issues with finances or struggling with their mental health, and Marie Curie, which provides overnight palliative care for cancer patients at home as well as in its valuable hospice provision. Marie Curie nurses care for people in 31 out of 32 local authority areas in Scotland and the charity’s work ensures that vital research into palliative and end-of-life care continues to be a priority. Of course, Cancer Research UK, together with clinicians, does similarly important work looking at how to improve treatments for the future, and funding scientists, doctors and nurses to help to beat cancer sooner.

The work of those charities and many more makes an immeasurable difference to the lives of people across the country. They do it because they care and because many of the people in those charities have experienced the effects of a cancer diagnosis at first hand. We must continue to support charities such as Cancer Card because, from 2015 to 2019, something like 141,000 adults in Scotland received a cancer diagnosis and the number shows no sign of decreasing anytime soon.

Presiding Officer, the fight against cancer continues, but thanks to the work of Cancer Card and other charities, people’s battles are not fought alone. For that, we thank them.

13:09  

I congratulate Miles Briggs on having secured the debate. I wanted to speak because most of us will have been affected by cancer in some way—either through ourselves, our families or other people who are close to us being diagnosed. I am no exception, but I will not regale members with a personal story today. We all know about cancer and the effects that it can have.

I had a look at the Cancer Card website. It was not clear to me that there is a card involved; however, there is one, and Miles Briggs handed it to me earlier. I think that the idea is that when a person anywhere in Scotland is diagnosed with cancer, they will be given a card. There is a barcode on the back, which can be scanned and takes the user to a website. I have tried it and it works. When someone gets to the website, as we have heard, it is a one-stop shop of services across Scotland. It is a fantastic resource that can be built on, because when someone is diagnosed with cancer, there is a feeling of despair and “What do I do now?” People really need to know where to turn.

The website is very good, because it is localised and there are services throughout Scotland. In my own patch, which is Lanarkshire, places such as Kilbryde Hospice, Lanarkshire Cancer Care Trust, Lanarkshire Carers, Lanarkshire’s Speak Easy cancer support group—which is for people who have throat cancer—Maggie’s Lanarkshire, Leukaemia Care, move more North Lanarkshire, and Strathcarron Hospice are listed. Of course, there will be more groups out there.

The website is really good, and I congratulate Jen Hardy on getting it set up. We can build on it, and it needs to be promoted. What we actually need—I do not know whether this is in place yet—is everyone who has a cancer diagnosis, as I described at the start of my speech, being given a card so that they are signposted to local and national services. I think that that will be a great comfort and help to people.

Once again, I congratulate Miles Briggs and I congratulate Jen Hardy on getting the service going.

13:12  

I congratulate and thank Miles Briggs for securing debating time on an important subject—one that is, going by the contributions, clearly and unsurprisingly close to everyone’s hearts, for many personal reasons. Even if someone has not had personal experience of cancer or has not had someone close to them experience it, hearing the stories of people who have had a cancer diagnosis and the challenges that they have had to face over the years will often move us to tears.

I offer my full support for everything that has been said by all members who have contributed to the debate. I join each and every one of them in paying tribute to Jen Hardy, who is in the gallery, alongside Ian Pirrie, the first CEO of Cancer Card. Miles Briggs is right that there are tough times in the job, for sure, but one of the best parts of it for all of us as members of the Scottish Parliament is getting to meet people and hear their phenomenal stories.

I enjoy meeting everyone, of course, but there are certain people who have an energy about them and immediately light up the room, and that energy stays with you for quite a while. I can think of a number of people I have met over the years who are like that, and Jen Hardy is absolutely one of them. I met her only yesterday, but I could feel her enthusiasm for what she does and her energy in wanting to improve the lives of, and give support to, those who have had a cancer diagnosis.

Thankfully, I have never had a personal diagnosis—I have known many people close to me who have—but nobody would have faulted Jen Hardy for just getting on with life in her own way and dealing with the difficulties that a diagnosis such as hers throws up. She is undoubtedly getting on with life, but what she is also doing—and doing very well—is supporting others through her efforts with Cancer Card. For that and the fact that she is using her time to ensure that people right across the country receive support, I pay her all the tribute in the world that I possibly can.

I want to pick up on a couple of points that colleagues have raised in the debate. As I have seen in my time as an MSP and in government, the best ideas are always the most simple ones. We can all think of such examples. One great example is Mary’s Meals—a simple but so effective concept—and Cancer Card is in the same bracket. Its simple idea is to have a one-stop shop of information for people to access. Those who have not gone on to the Cancer Card website should do so; all that people have to do is put in their location and some basic information about the cancer that they are suffering from or want support for, and, with a click, they are on a webpage that provides access to and sets out contact details for the support groups that are closest to them. It is a simple but really effective idea.

What I have heard from a number of third sector cancer support organisations and charities is that people do not hear about that sort of support until they are well on in their cancer journey. When I recently visited the Maggie’s centre in Edinburgh—which will be known to many and might well have been visited by a number of members across the chamber—the people there told me that they would not need to do any fundraising if they had a pound for every time somebody walked through the door and said, “Oh, I wish I’d known about you guys sooner.” We do not want that to be the case. We want people to get information when they are diagnosed so that, as Graham Simpson rightly said, they can access support right away.

We have to think about the point that Jackie Baillie made—and made well—about many people who get such a diagnosis going into almost a state of shock and not necessarily absorbing all the information that they receive. It is therefore really important that we and the NHS follow things up with those individuals and ensure that they get the information that they need about support—and not just that one time when they get the card, although that is an excellent idea that I will take away and address shortly. We should be going back again and again to ensure that those individuals get the support that they require.

As for Miles Briggs’s very reasonable question about the new cancer strategy, I think that the debate is taking place at a really opportune time, given that the strategy is very much in its development phase. Many organisations and individuals have inputted into the consultation on the strategy, and I give Mr Briggs an absolute commitment that a key part of it will be access to support. Indeed, having met Jen Hardy and Breast Cancer Now yesterday, we are considering how Cancer Card can be part of the support that is offered.

Another issue is how we ensure that our clinical colleagues know about Cancer Card. It is all fine and well our knowing about it and the public knowing about it, but it is really important for our clinicians to know about it, too. After all, they are often the ones who have to give people the difficult news about a cancer diagnosis.

I agree with the points that have been made about third sector support being more important than ever before. I think that that was the case before the pandemic, but it has become exceptionally important in the light of the challenges that the pandemic has brought to bear on us.

I also agree with the importance of early diagnosis. That is why we are investing in our rapid cancer diagnostic services. Indeed, the First Minister has just announced two additional services to ensure that people can get a diagnosis sooner. After all, we know as a result of really difficult decisions that we had to make during the pandemic that there is a backlog in cancer diagnostics.

I end where I started, by commending Jen Hardy for her work on Cancer Card and for what has been achieved so far through what is a really easy-to-use website. I should say to Graham Simpson that it is a QR code rather than a barcode on the back of the card—we will bring him kicking and screaming into the 21st century yet. If people scan that code, they will get immediate access to the website.

The website does not just focus on patients; it also gives access to support for partners, families and employers, all of whom have different support and information needs. The resource is a fantastic addition to the support that we already provide. As I said, I have given a commitment to consider how we can incorporate it in our future work on our cancer strategy.

Again, I thank Miles Briggs for securing time for the debate, and I congratulate Jen Hardy and the team at Cancer Card for all the incredible work that they have done. I wish her the best of health in the future, and I wish the Cancer Card charity every success in the future. I am certain that its work will help a great many people.

Thank you, cabinet secretary. A whole new exciting world of QR codes has just opened up for Mr Simpson.

That concludes the debate. I suspend the meeting until 2.30 pm.

13:20 Meeting suspended.  

14:30 On resuming—