Childhood Cancer
The final item of business is a members' business debate on motion S3M-3441, in the name of Nanette Milne, on childhood cancer—"More Than My Illness". The debate will be concluded without any question being put.
Motion debated,
That the Parliament highlights a survey by children's cancer charity CLIC Sargent that found that 97% of children and young people with cancer say that it is important for them to be able to return home during their treatment but that many parents in Scotland say that they do not get the support that they need when their child is at home; notes that children and young people say that living with cancer is about more than their illness; expresses concern at findings that about half of parents who want support with the education of their child with cancer, such as access to home tutoring, are not getting it or are finding that it is insufficient; recognises the need to help children and young people and their families in rural and urban areas across Scotland to keep up with their ordinary lives; welcomes CLIC Sargent's report, More Than My Illness, published on 13 February 2009, proposing innovative ways of reaching families of sick children across Scotland; notes the success of the Royal Aberdeen Children's Hospital and the CLIC Sargent nurse in helping to coordinate and plan aspects of care and support for children in Aberdeenshire; further welcomes the commitment to both specialist and local support made by the National Delivery Plan for Children and Young People's Specialist Services in Scotland, and highlights the need for key workers to better coordinate and plan all aspects of care and support for every child and young person with cancer.
I am pleased that the motion that we are debating has received a great deal of cross-party support, because it is important that we get to grips with the issues that surround childhood cancer.
Although it is relatively rare, cancer remains the biggest killer disease in children who are more than a year old. Around 4,000 children and young people are diagnosed with it each year in the United Kingdom. They face many issues that are akin to those that are faced by their peers who have other complex health needs, and they and their families need co-ordinated community-based care and support to help them to navigate health and social care services, and to keep up their education. They also need help with their emotional needs, financial support and clinical support at home, particularly towards the end of their lives. Survivors need help to live with and beyond their cancer. Those who survive into adult life may be problem free, but others may experience late effects either of their initial illness or of the treatment that they received for it. The late effects of childhood cancer will be discussed next Wednesday in the cross-party group on cancer, of which I am a co-convener. I encourage any interested colleagues to come along to that meeting.
CLIC Sargent Cancer Care for Children is the United Kingdom's leading children's cancer charity. It provides care and support services to children, young people and their families throughout the UK. We should acknowledge its excellent work and pay heed to its recommendations for improving the cancer journey of all of those who are affected. Last February, CLIC Sargent published a report entitled, "More Than My Illness", which dealt with the needs of children with cancer. Soon, it will issue a report on how to support sufferers in the 16 to 24 age bracket. The recommendations in the report followed a survey that showed that 97 per cent of children and young people who have cancer feel that it is important to be able to return home during their treatment. It also showed that many parents fell that they are not getting the support that they need when their child is at home.
Children and young people clearly feel that living with cancer is about more than the illness itself. They want to live their lives as normally as possible, which means that they need to keep in touch with their friends and keep up with their school work. They need help to enable them to cope with normal life, wherever they live, whether that is in cities that are close to specialist treatment centres or in remote and rural parts of the country.
CLIC Sargent's research found that there is inequity of provision across the country—something that often comes up when we discuss health issues in the chamber. It identified a lack of children's nurses and social workers, which means that parents are not getting the level of support that they feel they need when their child is at home. That results in children spending more time in hospital, staying there longer before they go home, and ending up back in hospital for minor treatment that could easily take place in the community.
CLIC Sargent recommends a more co-ordinated approach in order to address the gaps in care provision. If safe and effective care is to be given as close to home as possible, each patient should have a key worker to co-ordinate care across all clinical and non-clinical services, who would act as the main family contact with health, social care, education and other services. That person should be a trained children's cancer nurse.
Each child's care needs should be carefully assessed, and a care plan should be put in place that should, as a minimum, take account of clinical, educational, social, emotional and financial needs. The services that are identified in the proposed care packages should then be delivered by health, education and social care professionals working together—and with the family—as a fully integrated multidisciplinary team.
That holistic approach to caring for a child with cancer is the ideal, but it is not easy to achieve. However, progress is being made in Scotland, particularly in helping children and young people with their education. Paediatric outreach oncology nurses—POONs, for short—are now working in Glasgow, Edinburgh, Aberdeen, Dundee and Inverness. They are liaising with schools and are working on the development of individual education plans and continuing support plans for their young patients. They are visiting their schools at the start and at the end of treatment and are addressing issues as they crop up.
In the Grampian NHS Board area, a CLIC Sargent nurse who is based in the Royal Aberdeen children's hospital supports young patients in the northern isles as well as those in the less distant parts of the area. I have no doubt that other members will talk about the contribution of such specialist nurses in other parts of Scotland. I asked for some detail about what the Grampian nurse's work entails in practical terms and was given the example of a toddler from the islands who has been diagnosed with leukaemia, which is one of the more common forms of childhood cancer. From the time of the patient's impending discharge from hospital, with a Hickman line in place for the administration of chemotherapy, the nurse was involved in the detailed planning and co-ordination that is required to formulate a care plan for a youngster who is in the acute stages of cancer, at home on an island. Highly specialist education was required for the family and for a wide range of the local health care professionals, who had little experience of dealing with such a case.
Also included in the nurse's responsibilities were weekly blood counts and reporting the results to Aberdeen for titration of the chemotherapy dosing; arranging the supply and administration of monthly chemotherapy injections; arranging flights for follow-up visits to Aberdeen; maintaining regular contact with the family and advising and counselling them; overviewing clinical change and progress; interpreting blood results; and, on completion of the primary treatment, arranging monthly general practitioner follow-up visits and three-monthly specialist follow-up visits in Aberdeen. Obviously, a great deal of highly skilled and specialist work was involved to ensure that that child and his family from a remote community got the same high-quality care and treatment that they would get if they lived on the mainland.
I do not know whether the case to which Nanette Milne refers was a constituent of mine, but I certainly echo what she said about the high esteem in which the nurse in Aberdeen is held. My constituents draw very heavily on such support, which perhaps goes some way towards explaining the level of support for fundraising efforts for CLIC Sargent in Orkney, including the boxing day dip in Scapa Flow, which, in the light of the discussion that we had this afternoon about the perils of water rescue, and the perils of cold water in particular, is perhaps ill advised. Nevertheless, the funding challenges remain and are extremely acute.
I agree.
I have cited only one example, but it is clear that closely co-ordinated partnership working is essential to support children with cancer in the community throughout their treatment and—if, sadly, it is unsuccessful—throughout their end-of-life care, in order to ease as much as possible the stress on them and their families.
It is CLIC Sargent's view that the national delivery plan for children and young people's specialist services in Scotland is making good progress, and that that must continue until a key worker and a community multidisciplinary team are available for every child and young person who is diagnosed with cancer.
In respect of cancer among the young, we are looking at a work in progress. I commend CLIC Sargent for what it has done and for what it continues to do to improve the quality of holistic care for young patients on their journey with cancer, from diagnosis through to long-term survival or, sadly, in some cases to the end of their lives.
Thank you, Presiding Officer, for allowing me to speak second. Due to a derailment on the train track at Carrbridge, if I do not catch the 5.40 train, I get home well after midnight. After all the points of order, I think that it might still be well after midnight before I get home, but I thank you for your co-operation. I apologise to the other members in the chamber, as I will leave after my speech.
I congratulate Nanette Milne on securing this debate on childhood cancer. She has a tremendous commitment not only to the issue but, in particular, to the cross-party group on cancer. She is very passionate about it and has made a tremendous contribution over the years.
There is a commonly used statistic that one in three people will suffer from cancer at some point in their life. We all acknowledge that treatments are improving—the advances in medical science truly have to be commended—but, although treatments can save lives, or at least prolong them, they often come with considerable side effects. Those can be daunting for adults but even more so for children, and they can be very confusing for young children.
As Nanette Milne said, CLIC Sargent does tremendous work assisting young patients, their parents and their brothers and sisters. Although the cancer directly affects the child, there are obviously knock-on effects for the rest of the family.
In November last year, one of the newspapers in the Highlands ran a story about a three-year-old girl who had amazed many by getting the all-clear after treatment for a particularly aggressive form of cancer, neuroblastoma, of which there were only 90 cases throughout the UK. The young girl and her family live with the concern that there is a 50 per cent chance of the cancer returning, but—as Nanette Milne said with reference to the facilities in Aberdeen—they are also greatly indebted to CLIC Sargent for the support that they received at its treatment centre in Yorkhill.
While the girl was undergoing several courses of chemotherapy and almost 70 blood transfusions, the charity housed the family at Cruachan house, which is a short walk from Yorkhill hospital where the medical team was defying the odds to clear the cancer. Her brother and sister still talk about how enjoyable, helpful and supportive their time at Cruachan house was. Such a facility is very important for all families but, as Liam McArthur and others have said, it is even more important for families in remote and rural areas.
Although the incidence of cancer among adolescents and young adults between the ages of 15 and 24 is low in percentage terms—it accounts for approximately 0.7 per cent of all cancers in Scotland—the impact on the 160 young people affected, and their families, is considerable.
Although the opportunity to have accommodation close to where treatment is delivered is important and appreciated, as Nanette Milne's motion points out, 97 per cent of the children who were surveyed by CLIC Sargent said that it was also important for them to be able to return home during treatment. If we combine that with the high number of parents who stated that they do not get the support that they need to allow that to happen, it is clear that we must do more for young cancer patients. Of the young people surveyed, 93 per cent said that their diagnosis had affected their employment and 94 per cent said that it was important to maintain their social life and contact with friends, family and colleagues during treatment.
The issue is of huge importance. Some of the stories that we hear about young people and their treatment are harrowing. I commend CLIC Sargent and congratulate it on its wonderful work, and I encourage patients and their families to speak out about how much they appreciate those services.
I congratulate Nanette Milne on securing the debate and echo many of the sentiments that she expressed in her motion and her opening speech. I preface my remarks by declaring that I am a patron of the Youth Cancer Forum Scotland, which is a partnership venture between the cancer charities CLIC Sargent, Tak Tent and the Teenage Cancer Trust. I base my contribution on my experience of and involvement with the Youth Cancer Forum Scotland. Its work is relevant, as the forum was set up in recognition of the need to help young people throughout Scotland
"keep up with their ordinary lives",
as the motion says.
The forum, which was the first of its kind in Scotland, aims to provide support for young cancer sufferers and their families. It was launched in Perth a year or so ago. At the launch, several of the aforementioned charities attended, as did the local MSP, Roseanna Cunningham, and other interested MSPs, including Mary Scanlon. More important, many of the young people who were to benefit from the scheme were present. It was good to hear from them their stories and their excitement about and enthusiasm for an online network that would allow them to connect with other young people who were going through similar experiences.
The young people's stories were incredibly moving. Young cancer survivors spoke about the difficulties that they faced, the physical and mental effects of treatment programmes, the loneliness and isolation that illness can cause and the social and educational impacts of missing school. One speaker, who had lost his young sister to the disease, told a deeply emotional story about the impact on him of her illness and death. That highlighted an issue about cancer in young people that I had not previously considered—the impact on the siblings. Mary Scanlon mentioned that, too. That young person spoke about how their education suffered and how they struggled to come to terms with the devastating impact that the disease had on his wee sister. It pained him to admit it, but he said that he was also a bit jealous of the focus on his wee sister and the attention that she got. He was very brave to be so candid and he showed that those helping and supporting a cancer sufferer should not forget that the brothers and sisters suffer, too.
Behind the tears and the tragic tales, there was an uplifting energy in the way in which the young people spoke at the forum's launch. They were absolutely committed to making a success of a youth-led network that provides peer support. It is that youth-led approach that makes the network so special. The young people who are behind the scheme want to help others and to provide a bit of normality for youngsters who are suffering from cancer, when otherwise they would be stuck in their bed and unable to go out or interact with other people their age, as Nanette Milne pointed out. Those youngsters know what it is like to have their lives limited by cancer and to be scared about what the future holds. They know how it feels physically when going through treatment. Instead of just thinking about it, they have used modern technology proactively so that other young sufferers can go online and find a ready-made support network.
I thank Nanette Milne for raising what is an incredibly important topic that is definitely worthy of debate and discussion. I hope that, like me, the minister congratulates the youngsters in the Youth Cancer Forum, who are doing what they can to support their peers, and the other organisations and groups that support youngsters and their families at what is a most difficult time.
I, too, congratulate Nanette Milne on securing the debate. Through you, Presiding Officer, I apologise to other members as I might have to leave early to catch a train to attend a meeting in Stirling. [Interruption.]
I think that you might have your BlackBerry on.
Apologies, again, Presiding Officer. I find it difficult to get these things off.
Just throw it up the back, then.
I will put it away from me.
Nanette Milne, Aileen Campbell and Mary Scanlon all laid out much of the material around the debate. It is true that, every day, 10 families are told that their child has cancer, which remains the most common cause of non-accidental death of children and young people in the UK.
We should not forget that advances in the treatment of childhood leukaemia in particular have been enormous. When I did my first house job in paediatrics at the Western general in Edinburgh, the survival rate was about two and a half years, whereas now many of the individuals affected live healthy lives at least until late middle age. I welcome the fact that the cross-party group will look at that, because a recent paper in the British Medical Journal showed a heightened risk of numerous problems in middle age. We need to consider focused screening of that group at a later stage.
The treatment of such children is often successful now, but it can take them away from their homes, parents, siblings and friends for long periods. Those who are of school age often find it difficult to keep up to date with studies because, although a teacher might be provided on the hospital ward, the side effects of the illness and treatment can make the children very tired. There are also practical issues to consider, such as the emotional impact of cancer with which families have to deal, getting the child to and from hospital and caring for other siblings as well as other financial implications.
The report "More Than My Illness", by CLIC Sargent, is interesting and I will be interested to read the follow-up report when it is published. The report was compiled after speaking to children, parents and siblings about their experiences and it provides us with a valuable insight into the needs of young people with cancer and their families. I understand that 97 per cent of the children who were surveyed said that they wished to return home during their treatment. Unsurprisingly, children and young people who are diagnosed with cancer are anxious about being away from home so we should do our best to ensure that they can return home when it is safe and appropriate for them to do so.
It is appropriate that parents have the support that they need, not only to deal with the child's illness but to meet the child's educational and support needs. Part of that has to be the provision of chemotherapy in the spoke units under the hub-and-spoke arrangements that Labour was involved in setting up and which the current Government has continued. Those managed care networks with the hub-and-spoke arrangements have proved successful in allowing people to have chemotherapy much closer to their homes.
The report advocates a co-ordinated approach to community care and support services comprising a key worker care plan based on individual need and good information to support decision making. As Aileen Campbell illustrated eloquently, it is often the case that other children in the family are not recognised as needing support, but they are of considerable importance. I ended up treating such children as adults who had not come to terms with what had happened to their siblings when they were ill.
The organisation of such support is complex, but it is beginning to develop—I give the good example of the support network at Yorkhill hospital in Glasgow. The challenge for the Government will be to make the services patient and family focused and to fully integrate them so that they work in support of these children and their families. I know that the minister wants as much as I do to make that work, but it is not an easy task, as we discussed in another context today. However, it is of great importance that we achieve that co-ordination. Once again, I thank Nanette Milne for bringing the motion to the chamber.
I welcome the contributions to this afternoon's important debate and thank Nanette Milne for raising the subject.
The Scottish Government is committed to improving the wellbeing of children and young people in Scotland generally, as well as of those who have cancer. As has been said, cancer is a debilitating disease that affects every aspect of life. Some elements of it have not yet been conquered by medical science, but we can make a real difference in numerous areas, both clinical and non-clinical.
The CLIC Sargent report highlights that in many respects the care and support that we offer to children with cancer is among the best in the world. We should be proud of that achievement, which is a great credit to all the hard-working and dedicated health professionals and volunteers who treat and support young cancer sufferers and their families. However, more can undoubtedly be done, which is why our commitment to children and young people's health is on-going.
In March 2008, the Cabinet Secretary for Health and Wellbeing announced £32 million of funding to improve a wide spectrum of specialist health services for children and young people. Consultation and extensive service reviews led to the publication of a national delivery plan that set out how to use the money to maximum effect.
Children's cancer emerged as a top priority. The cabinet secretary confirmed that both the Royal hospital for sick children in Edinburgh and Yorkhill hospital in Glasgow would be supported to deliver the full range of cancer services while other hospitals would operate on a shared-care basis to ensure the best possible treatment for all cancer patients throughout the country.
To date, more than £1.3 million of national delivery plan money has been invested regionally in children's cancer and a further £337,000 has been put towards national elements. That has enabled expansion and improvement, which has allowed a more holistic service to be offered to patients, which aids their recovery and rehabilitation.
In 2010-11, additional investment is expected to be in the region of £1.5 million. As well as expanding the clinical teams within regions, money will go towards a number of national projects, such as a study into the long-term effects of having survived cancer as a child and the development of a strategic nationwide approach to palliative care. Perhaps that will help address the first point that Richard Simpson made about some of the evidence that is coming to light about survivors in middle age. It is intended that that approach will facilitate care closer to or in the patient's home.
We have also taken steps to establish a managed service network, which is fundamental to the delivery of shared care between specialist and local centres when that is safe and possible. That step should mark a significant shift in cancer service arrangements for children.
In addition, the living with cancer group is currently working through the children and teenagers Scottish cancer network to identify ways to engage more closely with children and young people affected by cancer to give them the opportunity to share their experiences and become involved in how services should be delivered in the future. Health care professionals and representatives of voluntary organisations, including CLIC Sargent, are also involved in that work.
The investment that the minister has laid out will be very welcome. CLIC Sargent representatives in my constituency have been impressing upon me the fact that the current difficult environment for raising funds is presenting real challenges for them. Is CLIC Sargent involved in the discussions about how the investment that the minister is talking about is being delivered and how the fundraising activities of CLIC Sargent can best be targeted to meet that common objective?
Yes. I can confirm that CLIC Sargent is involved in those discussions.
On the role of the voluntary sector, we are extremely lucky in this country to have a strong and dedicated third sector that provides excellent support to children and young people with cancer and their families. I am sure that everyone here will want to commend the staff and volunteers of charities such as the Teenage Cancer Trust, the Youth Cancer Forum, which Aileen Campbell said is doing some fantastic work, Tak Tent, Maggie's centres and, of course, CLIC Sargent, as well as many other smaller organisations that provide a range of services for young people who are living with cancer. We continue to look at how we can support such groups.
Education is an important issue in the CLIC Sargent report. As the report highlights, children and young people affected by cancer are likely to have their education disrupted by prolonged or repeated period of hospitalisation. Arrangements have to be made to ensure that that group of children and young people receive the educational support that they require to meet their full potential. In Scotland, education authorities have a duty to ensure that arrangements are in place for pupils who are unable to attend a suitable educational establishment as a result of their ill health to receive education elsewhere, such as at home or in hospital.
The Education (Additional Support for Learning) (Scotland) Act 2004 plays an important role by placing duties on education authorities to identify, meet and, importantly, keep under review the additional support needs of all pupils for whom they are responsible. The act also gives parents or carers of children with additional support needs the right to have more of a say about a pupil's educational provision.
Throughout children's services, getting it right for every child is the new approach that puts the child at the centre. It provides the foundation for all services for children and young people and requires services to take a co-ordinated approach. GIRFEC is the how—how we adapt and streamline systems and practices to improve the development of a common language and shared understanding between agencies as they work together to support children and young people.
Of course, families' views are central to the process. We have recently talked to parents throughout Scotland about their families' experiences. Among other things, parents commended approaches such as key working—that mirrors a central recommendation in the CLIC Sargent report. As a sponsor of Care Co-ordination Network UK, the Scottish Government already supports the ethos and practice of key working, and I was pleased to hear of the positive difference that key workers are already making in the lives of families with children and young people, including those with cancer.
I hope that I have made clear the number of initiatives that demonstrate the Scottish Government's commitment to supporting children and young people with cancer. We take that commitment seriously and will continue to strive to ensure that the best possible care is provided to children and young people with cancer in Scotland.
Meeting closed at 17:41.