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Late Effects and the Impact on a young persons Future Ruth Elson.

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Presentation on theme: "Late Effects and the Impact on a young persons Future Ruth Elson."— Presentation transcript:

1 Late Effects and the Impact on a young persons Future Ruth Elson

2 Increased Survival Increased recognition of late effects

3 Healthcare Provision Healthcare provision needs to address Late Effects as a growing concern by recognising the need for specialist input.

4 Late Effects Due to: The Cancer itself Surgery Chemotherapy Radiotherapy Can affect both physical and psychosocial health

5 Plan Background to Adolescent / young adult clinic Planning the clinic Setting up the clinic Funding Entry to clinic Guidelines After cure

6 Planning Professor of Paed Oncology SW regional Survey My Experiences What did we think we needed What did our regional centres need

7 Funding We had to be creative Looked at patient Numbers Consultants Clinics Moving patients Appointment of new consultant gave the opportunity to designate a lead role in late effects Discussion with our colleagues

8 Role To educate young adults about their disease, any late effects that they may experience and to empower them to make informed decisions about their future healthcare.

9 Ideal Clinic One stop shop All specialities available Psychology support Teenage/ young adult environment

10 Entry to Clinic 16 years or over 5 years from diagnosis 3 years from end of treatment Referal from consultant Summary of treatment

11 SIGN 76: long-term follow-up of survivors of childhood cancer 1 All survivors of childhood cancer should be actively followed up for life At the end of a course of cancer treatment, patients, their parents/carers and GPs should be given a summary of the treatment and a list of signs of late effects to look out for 1. SIGN 76. Long term follow-up of survivors of childhood cancer, January Each survivor of childhood cancer should have access to an appropriate designated key worker to co-ordinate care 1

12 CCLG: Therapy-based long-term follow-up practice statement 1 Guidance for surveillance of survivors at least 3 years off therapy Protocols designed for use in the out-patient setting 1. UKCCSG Late Effects Group. Therapy-based long-term follow-up, 2nd edition, April Summarise treatment received under the headings: - Chemotherapy - Radiotherapy - Surgery Work through Treatment/potential late adverse effects lists and select appropriate follow-up protocol 1

13 NICE: Improving outcomes in children and young people with cancer 1 Late effects clinician Multidisciplinary team (MDT) 1. NICE guidance on cancer services: Improving outcomes in children and young people with cancer, August Key worker Risk of late effects discussed with the patient and parents/carers Clear lines of communication 1 Surveillance of survivors Care plans

14 After Cure

15 After Cure – Booklet

16 After Cure – Factsheets

17 After Cure – Treatment card

18 The Race For Life When times are hard Try to remember Things always seem Worse than they are. Once upon a time I used to believe Life would be quite simple Now I know different. There will always be A person to judge A starting line Someone to beat A hurdle to cross A way to run A race to win An event to finish This race I call life. Bryony Carr 1996

19 One Young Person 1996 aged 17 years Bryony was diagnosed with a Medulloblastoma Craniotomy, complete Macroscopic removal Radiotherapy

20 Head 36 Gys in 20 fractions Spine 36 Gys in 20 fractions Head phase 2 18 Gys in 10 fractions

21 Recovery Ataxia 6th nerve Palsy Posterior fossa syndrome Weakness on right side Relearn to speak, walk and write Delayed a year at school

22 Recovery continued Took A levels gained a place at University to study Biomedical Sciences During her first year Bryony relapsed Multi focal relapse, cerebral hemispheres and spine

23 Relapse Multi focal relapse, cerebral hemispheres and spine MMT98 Protocol Ifosphamide, HD Cyclophosphamide, Etoposide and Carboplatin Autologous Stem cell transplant

24 Recovery Went back to University Part time Lots of support Scribe for exams etc Gained Honours degree in Biomedical sciences

25 Bryony today aged 30yrs Pan Hypopituitism Epilepsy 2005 Ovarian failure and infertility Psychosexual difficulties Back pain Unemployed

26 Some of Bryonys thoughts Frustrated at some clinics, no time, repeat history Poor short term Memory 30yrs but doesnt look it, Father advocate what will she do when she is 50yrs

27 continued Many Friends Fought for independence Increase confidence Loss of Driving Licence Mobility City Life

28 Biggest impact Change in expectation of future By 30yrs I expected to be married with 2 children and to have a career as a Scientist

29 continued Engagement broke because of loss of libido and Infertility Volunteers for CRUK and the Wallace and Gromit appeal

30 Someone Invisible An image in your mind of a person digging Digging into the ground for a piece of hope Someone who needs to express feelings And show to the world What they want to say rather than what has been said before A person full of life Needing the help and care fro all who listen Feelings shared with others A face smiling in its happiness Arms and legs staying strong And the feet standing sturdy in joy Bryony Carr (2008)


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