Breast Radiotherapy Rehabilitation Injury Service A national multi-disciplinary service for consequences of breast radiotherapy

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

2 The Context Two million people in the UK with a diagnosis of cancer - set to grow to 3 million by 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

3 Cancer Survivorship

4 At the end of Cancer treatment 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 Radiotherapy Induced Brachial Plexus Injury Facts and Figures Signs and Symptoms may include What is it? Radiation damage to the Brachial nerve How many people are affected? Severe pain/pins and needles (neuropathic pain) Lymphoedema Osteoporosis Lung damage Reduced quality of life Low mood

6 National Collaboration Bringing together expertise in rehabilitation and cancer care Royal National Hospital for Rheumatic Diseases, Bath The Christie, Manchester Barts Health, London

7 Case Study Mrs P Aged 79 Breast cancer (L) 1982, aged 47 Lumpectomy, Axillary sampling Radiotherapy over 3 weeks = 15 fractions. Treatment delivered from 2 different machines with no tattoos or markings. No other adjuvant treatment given PMH Osteoporosis, Scoliosis Medication Allendronic Acid 70mgs Calcium Supplements Lodine 60 mgs Omeprozole 20mgs Retired social worker, likes to eat out, loves travel Grandchildren live In Thailand like to go and see them as often as possible.

8 Case Study cont ( 21 years later) developed numbness and tingling in L arm. Eventually unable to lift her arm, became heavy and numb radiotherapy induced brachial plexus diagnosed developed respiratory problems including SOBOE due to radiotherapy damage and COPD.

9 Case Study cont Presentation at clinic Weak left shoulder, unable to raise her arm. Lower back pain, worse with standing and at night. Worsening neuropathic symptoms in left arm. Walks with a stick around the house and uses a wheel chair for going out which she HATES! Describes a feeling of loss of purpose/meaning of life Needs help to dress Unable to cut up her own food which stops her eating out Fatigued

10 Case Study cont Attended 2 day clinic at Barts Alendronic Acid causing gastric irritation - To have IV Zolendronic Acid 5mg yearly Amitriptyline 10mgs for neuropathic pain. Inhalers to mange breathlessness Declined local Psychology services Home adaptions and equipment to aid independence Admit to RNHRD for inpatient programme

11 Case Study cont In patient stay at RNHRD 2 weeks Poor posture addressed through physio, developed a straight posture no longer SOBOE. Now not starting the day with a massive productive cough Progressed form wheelchair to rolator frame for outdoor use went shopping by herself! Developed techniques to manage going out without feeling overwhelmed( relaxation and desensitisation) Developed some independence around ADL washing, dressing, meal preparation etc.

12 Why/How did these clinical problems arise? 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

13 National Service Patient Journey OR Referral Accepted onto caseload by Prof Candy McCabe, Clinical RNHRD Do not meet criteria discharged back to GP or signposted Telephone Assessment by lead nurse at RNHRD The Christie MDT Clinic RNHRD MDT Clinic Bart s MDT Clinic 3 month follow up OR In patient rehab programme

14 Inpatient Rehabilitation Service 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

15 Aims of National Service 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

16 Outcomes so far Early indications suggest: Reduced attendance at A&E and GP Improvement in pain Improvement in quality of life

17 NHS England funding no costs to GPs 3 centres RNHRD, Bath The Christie, Manchester Barts Health, London Life long service for this group Now recruiting patients into the service Service available to everyone registered with a GP in England

18 Referrals Professor Candy McCabe RNHRD Upper Borough Walls Bath