Nick Crowson-Towers Patient Leader The Patient Experience

Who am I? Heads2gether Patient/Carer Support Group Royal Berks Hospital Cancer Patient Action Group Thames Valley Cancer Network(TVCN) TSSG/PODG TVCN User Group/PPG TVCN Cancer Awareness Campaign TV Strategic Clinical Network (TVSCN) Cancer Steering Group Macmillan Surgery & Radiotherapy - Radcliffe Infirmary & Royal Berks 2004

HNC Acute Care – Complex or what? HNC treatment is extremely invasive requiring many clinical skills, processes and levels of care Standards of MDT care in-treatment are excellent Side effects can be many and impact quality of life when returning to ‘normal’ Patient/carer support groups Macmillan resources

Back in the Community Clinical needs after acute care need to be met by medical professionals Existence of requisite skills Availability of that skill Locality and transport Patient awareness CALL THE ACUTE CARE TEAM !

Side Effects ‘Patient Language’ Swallowing * Dry Mouth * Throat Soreness * Physio * Psychological Larry Valves Dental * Bone issues/fractures * G-tubes Emotional/appearance Speech Lymphedema Dietary * Source of info Local contact details Need for local support * My personal issues

Realisation Need for ongoing medical support Clinical Nurse Specialist inspiration to find out just how HNC patients and carers cope 2012 witnessed the development of a day out at a Thames Valley golf course!

Thames Valley Head & Neck Cancer Patient Support & Information Day A great opportunity to get together with other patients and carers to share experiences with each other, the Professionals and Support Groups

Impact of that conference 70 patients/carers and 30 Medical professionals – and Macmillan Free and honest exchange of information and experiences Key conclusion was that the rehabilitation of HNC patients is also complex - and lacking. 2 significant outcomes:- – TSSG took their findings into their MDT acute treatment pathway development – Macmillan picked up on the rehabilitation needs to become a major strategy

TV HNC Patient Activity ‘The HNC Patient’ has also been active Heads2gether Patient/Carer Support Group – Telephone support – Buddying Representations to the H & N TSSG including:- – restorative dental resource – HNC care pathways – TSSG Peer Reviews Cancer Centre Environmental Audits – TVCN UG-inspired initiative Influencing OUH Trust Executives

HNC Patient Care Improvements Clinical:- – IMRT – Laser surgery – Mesh masks (vs Plastic mouldings!) Macmillan (Physical and psychological) ‘Well-Being’ Course Pilot in TV (2014) Heads2gether RBH Patient/Carer Support Group (2012)

But there are still GAPS TVSCN with Macmillan developed this HNC Patient Rehabilitation Care Project as part of a 3-year strategy Formally research and report the gaps in HNC Patient Rehabilitation Patient needs, Care Centres, local centres, GP Practices, CCG plans, logistics, processes, Patient Groups, current schemes, costs………………………..

Thames Valley review of rehabilitation services for patients diagnosed with head and neck cancer, following treatment. Plans for the proposed Thames Valley Pilot