The idea that everyone should be treated equally is great in principle – but is it enough? Equality means that everyone gets the same amount of help. The problem with this idea is that it assumes everyone is starting equally, which is rarely true. For example, someone whose primary language is not English would be at a disadvantage when trying to access care that is designed for native English speakers, or a person with a low income may not be able to miss work, meaning they are less able to care for their child at home.
With equality, both children are given one box to help them reach apples on a tree. But the girl on the left is starting at a disadvantage – she is in a dip and the tree is leaning away from her. Whilst the boy can easily reach the fruit, the girl cannot.
There is however an alternative – equity. Instead of everyone getting exactly the same amount of support, each person gets what they need. For example, this might mean providing healthcare leaflets in different languages so that non-native English speakers can benefit from the same information, or providing financial support to parents of children with cancer.
With equity, each child is given the right amount of boxes they need to be able to reach the apples. The girl is given three boxes and the boy is given one – they now can access the same number of apples and neither child is at a disadvantage.
To show the real-life impact of equity, let’s look at a couple of examples.
Young cancer patients travelling for treatment
Young Lives vs Cancer’s Running on Empty campaign found that 71% of young people and families say they struggle to afford transport to hospital. The charity is lobbying for better financial support, and the following patient examples show whether equality (where everyone gets the same support) is adequate in this situation.
They shared Victoria’s travel costs during cancer treatment as part of their campaign. She lives on the Isle of Wight, an island without a dedicated cancer treatment centre, and had to travel to Southampton multiple times per week for her treatment. For an appointment, she would need to take a ferry and then a taxi, which could cost from £80 to £200 depending on whether it was peak times for the ferry.
Kathryn also shared her travel costs during treatment for Hodgkin’s lymphoma. She had to move back home with her parents during treatment, which meant a 50-mile round trip from North Wales to Manchester for each appointment. Fuel cost around £14 per appointment, plus any parking costs.
Would it be fair for Kathryn and Victoria to receive the same amount of support? If a grant gave each of them £50, they would both be treated equally. However, Victoria would still be footing a significant bill just to access lifesaving care, and Kathryn would not need all of the money for travel costs.
That’s where equity comes in. In this context, it means giving people the amount of help they personally need. So, Victoria would receive £80-200 needed to get to each appointment, and Kathryn would receive the cost of her fuel and parking.
This example doesn’t include some of the additional costs, such as food at hospital, the cost of maintaining a car, or of missing work. However, it clearly shows that blanket policies are not fair and equality is not enough.
Improving cancer care for people with autism and learning difficulties
Going through cancer treatment means a lot of new and scary experiences for children and young people, such as surgery and a bewildering array of tests like x-rays and scans. It also means giving up control of your life to people you barely know – letting doctors and nurses decide what treatment you will have, when you can go home and even when you are allowed to eat.
This can be particularly difficult for people with autism or learning difficulties, as they cannot control what is happening to them and may not be able to understand it.
It’s easy to think that all patients with cancer need equal care and treatment, but everyone is different and their needs vary. So, what needs to change to improve equity for people with these pre-existing conditions?
Jeanette Hawkins, Chief Nurse for CCLG and Young Lives vs Cancer
Jeanette Hawkins is leading a project, as part of the NHS Cancer Experience of Care Improvement Collaborative program, that aims to improve the experiences of children and young people with autism and/or learning difficulties during cancer treatment. She explained:
“The program enables healthcare professionals and people with lived experience of cancer to work together in order to improve the NHS cancer service. Each year NHS England reviews results from the Cancer Patient Experience Surveys, one of which includes responses about childhood cancer, to improve the experience of care for cancer patients, their families, and unpaid carers.”
For a number of years, data has shown that people with pre-existing conditions such as autism and learning disabilities report lower levels of experience satisfaction. Like the example with the tree, some children and young people are starting out from a different place and need extra tailored support.
Improving the cancer pathway needs tackling one step at a time, as one project cannot improve every aspect of cancer care. Early work in Jeanette’s project explored whether there was a particular area that was a common point of difficulty. Jeanette’s project team have focused on the experience of having an x-ray.
The x-ray experience
Some children and young people can have between 50 to 100 x-rays during their treatment and care, especially when relapse is factored in, so improving this experience could make a big difference for patients with autism or learning difficulties. The team also hope that making improvements in the x-ray procedure will be transferable to other types of tests, scans and investigations.
Equity would mean each patient is assessed prior to x-ray so that their unique needs are understood and shared with the radiology department. Jeanette hopes that the project can review and recommend how needs are assessed and what reasonable adjustments could be put into place. For example, this might mean giving simpler instructions one step at a time.
Claire, whose son James was diagnosed with leukaemia in 2014, explained:
My child has Down syndrome and associated learning difficulties, so if the radiographer gives multiple instructions like come in, go over there, sit on the couch and take your top off, he’s lost and confused immediately.
Solutions may be different for each child or young person – for example, some may benefit from watching a video about the procedure beforehand, like those produced by the Oncology Guide, or from having a play specialist or youth worker talking through photo flash cards. It is important to not assume that all people with learning disabilities or autism have ‘equal’ needs either. Each person’s needs will be different and what helps one child or young person could trigger another.
Jeanette said:
Equity is absolutely ‘the point’ with this project. To give some examples from our work so far, one child has a terrible journey to x-ray if the porter turns up with a wheelchair, because he does not see himself as a baby and it triggers non-cooperation before they even get there. Another child loves the ride in the wheelchair because the porter makes it fun.
Jeanette's team aim to increase the overall satisfaction score of patients with these additional needs having an x-ray by April 2025. So far, they have consulted with experts and parents to look at what evidence they need to understand patients’ experiences and gather ideas on what could be improved. They will test potential improvements, called interventions, using test and learn approaches which test ideas in a controlled way to see what works best and then adjust accordingly.
The Cancer Improvement Collaborative children, teenage and young adult cancer, learning disability and autism quality improvement project team.
The team has just finished collecting their baseline data, about current experiences of x-rays. Any improvement from the project will be measured against this data, and it will also be used to identify problem areas and what is helpful for patients.
Enabling collaboration
Each children and young people’s cancer service in the UK is likely to have fewer than 10 cancer patients per year who have pre-existing autism or learning disabilities. It would be a challenge for the NHS to invest resources into a project team for such a small number of patients in a single location, on top of ongoing NHS pressures. Therefore, collaboration is essential in order to have meaningful insights.
With the CCLG Chief Nurse managing the project, and with our NHS connections, we were able to provide the resources needed to undertake a national project involving all centres. Several hospitals are now signed up for the next phase of the project: testing the interventions.
These hospitals will collect feedback from families after every x-ray over the next 18 months, to monitor whether the intervention has improved their experience of x-rays. The project team will continue to assess the feedback and adjust interventions, if necessary, until they see sustained improvements. Quality improvement projects take a lot of time and expertise, but Jeanette hopes that they will see an impact by 2025.
Jeanette added:
It has been amazing how much support we have had for trying to help this group of patients. This has included parents giving their valuable time and expertise in the project, NHS England learning disability and autism programme of care support, and involvement from the Society of Radiographers, alongside hospitals in all regions engaging in some way.
We want every child and young person to be assessed prior to an x-ray to make sure any additional needs are met and communicated properly. The goal is to make sure children, young people, and their caregivers don’t experience unnecessary distress from a procedure that is a frequent and common part of cancer care.
Read next: 6 ways childhood cancer is different to adult cancer
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on Twitter: @EllieW_CCLG