1. Breast Radiotherapy Rehabilitation Injury Service A national multi-disciplinary service for consequences of breast radiotherapy Denise Moorhouse RGN Specialty Manager – Pain services Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Upper Borough Walls, Bath, BA1 1RL

2. Two million people in the UK with a diagnosis of cancer - set to grow to 3 million by 2030 Approximately 17 000 people are treated with radiation therapy in the UK every year and an estimated 80 000 are alive 2007 National Cancer Survivorship Initiative launched “Most modern surgery, radiotherapy, chemotherapy and biological treatments can have consequences which develop immediately, or become apparent years, or even decades later.” Maher 2013 The Context www.rnhrd.nhs.uk

3. Cancer Survivorship www.rnhrd.nhs.uk

4. At the end of Cancer treatment… www.rnhrd.nhs.uk Individuals receive follow up according to their needs. Most people will manage with open access to services Some will require shared care between agencies Few will be complex and require more intensive input.

5. Breast Radiotherapy Injury Neuropathic pain Lymphoedema Osteoporosis and bone loss Impaired lung function Anxiety and depression Impaired function

6. Why/How did these clinical problems arise? www.rnhrd.nhs.uk Historical cohorts Random choices of RT dosages and delivery Lack of evidence base, national protocols or treatment guidelines. Lack of modern techniques Inconsistent positioning therefore some areas of breast tissue/ axilla & supraclavicular nodes were over exposed

7. The Funded National Service www.rnhrd.nhs.uk Following evaluated pilots, the service was established NHS England funding – no costs to GP’s Now recruiting patients into the service very specific criteria Service available to everyone registered with a GP in England

8. National Service – Patient Journey www.rnhrd.nhs.uk OR Referral Accepted onto caseload by Prof Candy McCabe, Clinical lead @ RNHRD Telephone Assessment by RNHRD Do not meet criteria discharged back to GP or signposted 2 Day MDT Clinic: Day 1 Oncology, Pain, Rheumatology, Respiratory, Specialist OT and PT, Psychology Day 2 Therapist deliver strategies to the group 3 month follow up 2 week residential programme OR

9. Inpatient Rehabilitation Service www.rnhrd.nhs.uk RNHRD specialist rehabilitation hospital in the centre of Bath Two week individualised programme includes Daily physiotherapy, hydrotherapy and occupational therapy Psychology and pain management available as required

10. Aims of National Service www.rnhrd.nhs.uk 3 main clinical outcomes: Improvement in daily function Improvement in quality of life Improvement in pain management To build a knowledge base about this rare condition To provide support and education to health care providers on safe management of this condition

11. Outcomes so far www.rnhrd.nhs.uk Evaluated using various measures which include: Brief Pain Inventory – Short Form (severity & impact) Upper Extremity Functional Index PHQ-9 Depression SF36 Health Status Outcomes collected at baseline, 3 months and 12 months Patient feedback collected after 2 day clinic, 3 and 12 months Outcomes and feedback also collected pre/post inpatient stay

12. Outcomes so far www.rnhrd.nhs.uk Data collected at three months on 66 women shows that compared to baseline: 68% of women reported a reduction in pain severity 81% reported less of an impact of pain on their lives. 66% of women reported an improvement in upper limb function 68% reported an improvement in mood. 67% reported an improvement in social functioning and 35% reported an improvement in their general health.

13. Breast Radiotherapy Injury Rehabilitation Service Outcome Data Royal National Hospital for Rheumatic Diseases www.rnhrd.nhs.uk Postural / Positional Improvements Patients natural posture.After one session of education, in a corrected position. After 2 weeks of rehabilitation.

14. Patient feedback “The dedicated time with specialists who understood exactly what my issues were was fantastic. Thank you”. “To know that I can still be helped after so many years was really rewarding, just wish this service had been available before now”. “This was a very positive experience, it is fantastic that the late effects have been recognised and addressed. It is also nice to know that our experiences may help others”.

15. Referrals www.rnhrd.nhs.uk Professor Candy McCabe RNHRD Upper Borough Walls Bath 01225 473462 Candy.mccabe@nhs.net