Prynhawn Da a Croeso - Good Afternoon and welcome - and thank you to Clic Sargent for inviting me to sponsor today’s event on the issues impacting children and young people with cancer in Wales.
Every year in Wales around 170 children and young people are diagnosed with cancer.
CLIC Sargent is the UK’s leading cancer charity for children, young people and their families.
They fight tirelessly for young cancer patients – individually, locally and nationally.
When cancer strikes young lives CLIC Sargent helps families limit the damage cancer causes beyond their health.
For young lives, when the doctor says cancer, normal life stops. It is a devastating experience for the whole family.
Treatment is often gruelling, can start immediately and be given many miles from home.
Cancer affects every part of life including school, relationships, confidence, and emotional wellbeing.
CLIC Sargent plays a key role in providing care and support to the children and young people diagnosed with cancer in Wales each year.
Last year, they supported 288 children and young people with cancer and their families from Wales, and gave around 290 grants to a value of more than £57,000 to help families deal with the financial impact of cancer.
CLIC Sargent invests £300,000 in direct services and financial support to children and young people with cancer in Wales each year, which includes:
- A contribution to the funding of three Clinical Nurse Specialists and a Paediatric Social Work post supporting patients in shared care arrangements throughout North Wales
- A Young Person’s Social Worker for the North Wales region.
- a Young Person's Outreach Team in South Wales consisting of two Young Person's Social Workers and a Care Support Worker supporting 16-24 year olds affected by cancer.
- a Paediatric Neuro-Oncology Nurse Specialist Key Worker in South Wales.
- Cover at the paediatric principal treatment centre in Cardiff
- supporting patients in shared care arrangements in Bangor, Wrexham and Rhyl.
At CLIC Sargent they know that #Cancercosts young people and their families and can plunge them into debt.
Their research found:
- Parents spent an average of £600 additional expenses a month during their child’s active treatment.
- Three in five (61%) parents had accumulated some form of debt as a result of their child’s cancer diagnosis, mostly owed to family and friends or to credit card companies. One in six (17%) had borrowed over £5,000.
- As a result of their child’s cancer diagnosis, two in five (42%) parents stopped working, half (49%) experienced a loss of earnings, and almost a third (29%) felt they were able to do less at work.
- The top three financial worries for parents were energy bills, car-related costs and parking.
- Three-quarters (75%) of parents and over half (54%) of young people surveyed felt that managing their finances during treatment caused them additional stress and anxiety.
- Almost a third of parents (29%) were not offered parking exemptions at their main treatment hospital, despite government guidance to hospitals.
- Nearly half of young people who were in higher or further education deferred or suspended their studies during treatment. Almost a third (29%) ended their studies completely, while one in six (16%) continued in a reduced or part time way.
Families also told them that when the worst happened, meeting the costs of their child’s funeral was a significant concern. All too frequently, the cost of a funeral imposes a crippling and unmanageable financial burden on grieving families, during what is an already impossible time. CLIC Sargent has been campaigning for the UK Government to establish a Children’s Funeral Fund to support families.
They welcome the Welsh Government’s recent commitment to waiving children’s burial fees, which will make a huge difference to the families CLIC Sargent supports in Wales, who may be struggling to pay for their child’s funeral.
They call for all Governments’ across the UK to:
- conduct urgent reviews of all travel assistance available to parents and young people, and make recommendations for reform by the end of 2017.
- to review the financial support available for young cancer patients and their parents who are struggling to meet the costs of their energy bills.
- AND for financial services and energy companies to review their vulnerable customers’ policies to ensure they include parents of children with cancer and young cancer patients.
Last month Co-op Funeralcare announced that they were extending their policy of not charging for funerals for Children up to the age of 18.
As Chair of the Assembly Cross Party Group on Funerals and Bereavement, I am aware that Co-op Funeralcare attended the meeting of our sister group in Westminster last month.
Both this and the Welsh Government announcement that child burial fees will be scrapped in Wales, will be on the agenda at the next meeting of the Assembly group. We are inviting a WLGA representative to address the Group on the reasons for the rise in burial and cremation fees across Wales, and to set out how many local authorities will benefit from Welsh Government funds being made available in order to cost the policy more accurately.
The Cancer Patient Experience Survey (CPES) is an annual survey of cancer patients to highlight good and poor aspects of cancer care. To date, the Welsh CPES has not included cancer patients who are under 16 years old.
The lack of information about the patient experiences of children under the age of 16 is a longstanding issue that presents a significant challenge.
Without national patient experience data, it is difficult to develop meaningful indicators to drive improvements in children’s cancer patient experience.
NHS England has committed to developing a methodology to collect data on patient experience for under 16s in 2017, and CLIC Sargent are working with them to fast-track the collection of meaningful patient experience data for 0-24 year olds, so they can start learning from their experiences as soon as possible.
As they state “the Welsh Government should make a commitment to do the same”.
Teenagers and young adults with cancer are not accessing the care they require, in appropriate settings.
Despite the fact that national standards for the management of Teenagers and young adults have now been put in place, minimal progress has been made to increase access to the specialist support available to the 16 – 24 age group.
Teenager and young adult multi-disciplinary teams (MDTs) exist in South Wales, at University Hospital of Wales, and in the Clatterbridge hospital on the Wirral, to which North Wales young people would are referred.
The recommendations that all Teenagers and young adults diagnosed with cancer should be referred to the Teenagers and young adults MDT’s is not being complied with in many cases.
For example, North Wales Cancer Network has identified 10 young people who have been diagnosed with cancer in the past year who have not been referred to the Teenagers and young adults MDT.
Analysis of this information is on-going to identify why this is the case.
Overall in Wales CLIC Sargent believe that at least a third of young people with cancer are not referred to their specialist Teenager and Young Adult MDT for support, creating an inequity in service and depriving young people of choices in their cancer care delivery and support.
In order to ensure effective delivery of the Cancer Delivery Plan for Teenagers and young adults, it is essential that action is taken to ensure that the recommendation for referral to specialist age appropriate care and support is enforced.
This is the single most important action that could be taken on behalf of young people with cancer in Wales.
Without all Health Boards being held to account for their inaction to achieve 100% referral of 16-24 year olds to the appropriate Teenagers and young adults MDT, outcomes cannot be improved within this age range.
Young people will also not be able to access specialist support services or relevant clinical trials until this is achieved.
I will conclude by referring to the experience of a cancer survivor, my youngest daughter and the second of my daughters to survive Thyroid Cancer.
She was diagnosed a few months after University graduation in 2015 – but I will leave her to share with you her experience with CLIC Sargent because she will be speaking to you later.
My Colleague, Shadow Health Secretary, Angela Burns AM was to have spoken to you later, but has unfortunately had to send her apologises because she is unwell.
She asked me to pass on her high regard for the work of CLIC Sargent.
- In our child health debate, she called for the Welsh Government to extend Cancer Experience Surveys to collect data for under 16s, where there is currently no data collected on the experiences of child cancer patients to monitor the continuity of care for young people - very little research into the impact of modern pressures on child health and wellbeing – such as peer bullying and social media.
“This chimes with the calls that were made in the Royal College of Paediatrics and Child Health’s ‘State of Child Health Report 2017. It calls on the Welsh Government to fund a longitudinal study to track outcomes of infants, children and young people growing up in Wales to create data that will directly inform policies and services. Additionally, it states that the HealthWise population survey needs to take responses from under 16s as well. Now, both of these recommendations are important and also work alongside CLIC Sargent’s campaign for the Welsh Government to start collecting cancer patient experience data for the under 16s, which they don’t currently do. NHS England has committed to a methodology to do this, and I would like to ask you, Cabinet Secretary, to consider this for Wales”.
“The CLIC Sargent report also highlighted another very worrying finding, which has a very serious impact for young cancer sufferers. They found that young people felt they were not listened to or taken seriously when first presenting symptoms to GPs. This is concerning, as we all know that in many cancers, it’s vital to catch them early. Additionally, GPs rank the lack of training opportunities as one of their top-three barriers to identifying cancer in young people. I would urge the Cabinet Secretary to look into this matter as a priority, to ensure that young people have the voice they deserve”.
“Young cancer survivors may also have longer term mental health needs. CLIC Sargent highlights that when cancer hits, it can affect every part of a young person’s life, including schooling, emotional health, relationships and confidence. Cabinet Secretary, what we need to ensure is that we are producing resilient and well-adjusted children who will grow into resilient and well-adjusted adults. We need to focus our efforts on ensuring that children have access to effective mental health support. We need to ensure that children are taught the value of adopting healthy lifestyle behaviours and making good relationships”.
The Cancer Delivery Plan cuts across all aspects of patient care and through its implementation, cancer services should be better placed to meet the demands of people affected by cancer in the coming years.
With the number of people living with cancer in Wales expected to reach 240,000 by 2030, Wales Cancer Alliance, which includes CLIC Sargent, wants to ensure that cancer services are meeting the needs of people affected by cancer in the years to come.
The third sector has an incredibly important voice in influencing the strategic cancer agenda as well as delivering practical services for people at a local level.
They believe, rightly, that people affected by cancer and their carers should be at the heart of co-creating new services and cancer policy.
As they state, the new Cancer Delivery Plan, will require a parallel Working Performance Management Framework – and both the principles of closing the gap between ‘the best and the rest’ in cancer care, and focus on patient involvement and patient centred care in the delivery of cancer services in Wales, must be maintained.
Above all if aspiration is to become reality, the Welsh NHS must co-produce, design and deliver solutions with CLIC Sargent and its fellow Wales Cancer Alliance Members.
Diolch