Children and Young People with Cancer

This week’s blog has been written by Jenna Reid, Clinical Specialist Physiotherapist RHSC, Edinburgh and the Chair of the MSN National AHP and Psychology group working with Children and Young People with Cancer.

Jenna Reid jenna.reid@luht.scot.nhs.uk   [MSN msncypc.tayside@nhs.net]

So having been approached to write a blog about the National AHP and Psychology group working with Children and Young People with Cancer – in time for the Child Health AHP month – my mind went into over drive. Now if I had been asked to compile a report or write a clinical guideline, jobs a good ‘un’. A blog however is uncharted territory for me. But here goes…

Working in the Paediatric Cancer team at Edinburgh’s RHSC for the past four years, I have gained knowledge about childhood cancers, gained experience of the treatments used and learnt loads about life after cancer. As one of the three Scottish Principle Treatment Centres, alongside Yorkhill RHSC, Glasgow and Royal Aberdeen Children’s Hospital, Children and Young People with Cancer (CYPC) are often treated in a hospital many miles from home. Despite being isolated during multiple treatment regimes, the courage and resilience the CYPC and their family display never ceases to amaze me. I recall a wise Doctor once saying, “Cancer doesn’t just affect the child it affects everyone around the child”; a statement I have never forgotten. I’m sure you’ll recognise the thought that often a challenge in paediatric practice is getting the family on side before treatment begins.

But why has childhood cancer become a focus for therapy services? Childhood cancer is nothing new…

This is true. However what is new is the increasing rate of survival, now approaching 80%, (Cancer Research UK 2004) with Campbell J, et al. (2004) projecting by 2030, 1 in 100 of the total young adult population will be childhood cancer survivors.

Improving survival rates are partly due to a growing body of research attributed to multimodal clinical trials that most CYPC are now treated on. An increased knowledge of the side effects and long term effects of cancer treatment has caused a shift from traditional medical management to consideration of the patients’ and families’ (remember that wise Doctor!) quality of life during and after treatment.

Surely, as therapists if there is something we know, it is how to enhance and optimise quality of life…

The National Delivery Plan for Children’s Specialist Services in Scotland (2008) highlighted the need for investment in the workforce providing specialist services and subsequently therapist posts were created to support this area. The Children and Young Peoples Cancer Plan (2012) states, “All children and young people with cancer will have access to high quality rehabilitation services which will maximise their capabilities,” (p. 38).

Care is delivered all over Scotland, but how do we work collaboratively?

In order to deliver the best available care in a cohesive fashion, the Children and Teenagers Scotland Cancer Network (CATSCAN) which has evolved into the Children and Young Peoples Managed Service Network (MSN) was launched in March 2012. The MSN has six working groups, one of which is the AHP and Psychology group. Meeting on a quarterly basis with clear objectives, there has been a steady growth in the membership of professionals working throughout Scotland. A member of our group attends four of the other MSN working groups, ensuring the therapy voice is heard at all levels of service delivery. Having recently “adopted” the role of Chair, I feel privileged to lead a handful of Occupational Therapists, a pinch of SALT (Speech And Language Therapists), a measure of Dietitians, a stretch of Physiotherapists and most recently a natter of Psychologists in a group that has been credited for the active role it plays in developing services for CYPC in Scotland.

Some of the Group’s achievements…

One of the early challenges was to increase the awareness of the therapists’ role with CYPC. Thus the group set about designing the Roles and Criteria for Referral document which is available on the group’s website currently hosted by the Managed Knowledge Network (MKN) .The document aims to provide the wider MDT with an overview of the AHP roles and the part they can play in the management of common problems CYPC may experience.

With large MDTs delivering complex and variable treatments, the need for effective communication has been identified as a key element of patient care. Therefore the group developed the National Rehabilitation Profile and a guidance document to aid good communication. These documents can be found on the MKN website .The Rehabilitation Profile is based on the Additional Support for Learning Act and links with the GIRFEC model of care. It is a working document to aid communication between the patient / family and professionals, particularly acute and community therapists. We have collected feedback from community therapists who feel the document is useful and assists in inter agency working. Any feedback / comments / suggestions would be very welcome.

“But how should I treat a paediatric patient with cancer ?”

There is often anxiety around treating CYPC. Therefore the group set out to scope the learning needs of Scottish therapist using a NES Learning Needs Assessment Tool (2011) and Survey Monkey (2013). This led to creating a bank of online resources including; case-studies, clinical guidelines, care pathways, teaching resources etc. which are accessible as and when required, because although as a professional group we are resourceful we can be a bit forgetful at times, or is that just me?! Such resources are accessible on the MKN website and will continue to be updated. In November 2013 the group contributed to the first MSN CYPC Education Day. With an excellent therapy presence the day allowed for education sessions, a workshop and breakaway meetings to discuss how best to take the therapy services forward. Feedback is available on the MKN website. As such we are planning to organise regular peer review meetings out with our working group meetings, to discuss cases, service developments and standards of practice in order to facilitate equity of care throughout Scotland. If you would like to be involved please contact me.

But not all areas have the same therapy service provisions?

In conjunction with the National Delivery Plan investment, the group’s current task is to scope the wider therapy provisions for CYPC throughout Scotland to ensure equity of services. As part of this if your service receives the benchmarking document please take the time to complete to help us gather the correct information.

So in a nut shell….there is a flurry of activity in the world of CYPC and it is essential that therapists are part of the developing services at every level, as we have so much to offer the CYPC and their families. The National AHP and Psychology group is an established network and we are working hard to provide resources and information to support our peers. Please utilise us for advice / support or to tell us what we have missed out. If you are interested in joining the group or want to learn more, contact myself or the MSN. CYPC are rare but being a survivor of childhood cancer isn’t .

References:

Cancer Research UK 2004) . Childhood Cancer – UK Statistics. Cancer Research UK; 2004. http://info.cancerresearchuk.org /cancerstats/childhoodcancer/) .

Campbell J, Wallace WH, Bhatti LA et al (2004) Cancer in Scotland: trends in incidence, mortality and survival 1975-1999. Edinburgh. Information & Statistics Division; 2004.www.isdscotland.org/cancer_information

Managed Service Network Children and Young People’s Cancer Plan 2012-2015http://www.youngcancer.scot.nhs.uk/about/publications/newsletters

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