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What is the challenge your project is going to address and how does it connect to your chosen theme?

Radiotherapy (RT) for breast cancer can leave 2/3 of patients with lifelong shoulder pain, restricted movement and/or lymphoedema. Current policy endorses accelerated discharge at the end of radiotherapy to self-management.  As a UK centre with a radiation late effects service we have unique insight into the ongoing management of these patients. This identified continuing multiple outpatient appointments across providers.  These episodes and outcomes are recorded on incompatible IT systems, preventing knowledge sharing and oversight.  Patient engagement found frustration at repeat history taking, a sense of abandonment, and lack of knowledge on self-management.

The challenge is to co-design solutions to minimise cyclical referrals to outpatients and empower patients to manage ongoing effects of their cancer and treatments.  Building on a successful piloted swimming rehabilitation programme, we will use local pools as a novel outpatient setting for enhanced supported self-management.

What does your project aim to achieve?

Physical activity is a key component of self-management, reducing recurrence rates for breast cancer.   Exercise in water, to include non-swimmers, is the only exercise that lymphoedema patients can do without restrictive compression garments.  As a group activity, it is cost effective, sociable and therapeutic.  At a local pool, participants practiced physio taught exercises. Data showed all 17 participants improved shoulder function.  There was also engagement between patients and support from the attending health care professional (HCP).

We aim to scale up the pilot project to evaluate the pool as a novel outpatient setting:  Can we co-design resources to implement this to other patients?

It is intended that participants will improve function, gain support from others and develop lifelong skills for self-management.  HCP’s will work more cohesively, sharing information.  Outpatient appointments and cyclical referrals should reduce saving time and cost, improving patient experience.

How will the project be delivered?

Phase 1: Analysis of breast cancer pathways post RT discharge (i.e. number/type of outpatient appointments, repeated physiotherapy referrals).  A small pilot sample derived useful information with input from all relevant health care sectors. This provides a baseline to evaluate reduction or increase in referrals from the poolside as a novel outpatient setting.

Phase 2: Embedding swimming rehabilitation information at the end of RT for all potential patients.  Co-design with current participants to define information needs and delivery .

Phase 3: Scaling up.  Production of resources, potentially a nationally available NHS webinar to provide information on the swimming rehabilitation exercises (co-applicant is on the national NHS digital webinar working group).

Risks include poor participation, lack of sustained self-management and increased referrals.  However, the pilot study was well attended. Negative data will inform future self-management/outpatient strategies.

What and how is your project going to share learning throughout?

With co-applicants from the Somerset health care system including patients, there is scope for wide dissemination of results and learning. A mix of clinical inputs; oncology, radiography, physiotherapy and nursing, can each feed into national streams for their own specialities.

Ultimately it is hoped that participants will be the main drivers of change, the pilot group are active on social media and report positively to GP’s and further HCPs.  The Living With and Beyond Cancer team and Macmillan have an interest in this project, providing initial support for the pilot phase. These are national platforms for sharing learning both to patient and HCP’s.

Nationally we record and equate attendances at Health & Wellbeing (H&W) events with self-management, not definitive actions or participation.  We will record the uptake and sustainability of swimming rehabilitation to see if supported self-management replaces multiple outpatient attendances which will have national impact.

How you can contribute

  • Ideas on co-design methods
  • Input on developing the model of care.
  • Do you have experience of a similar project that could help us succeed?
  • How have you efficiently gathered information from different health care providers using different IT systems?
  • Would your radiotherapy or health & wellbeing teams offer webinar or remote access information regarding long term self-management solutions to their breast cancer patients?

Plan timeline

8 Sep 2019 Analysis of breast cancer pathways post RT discharge
8 Sep 2019 Review of pilot with recommendations
16 Sep 2019 Co design workshop with patients
18 Nov 2019 Embedding swimming rehab post radiotherapy for patients
27 Jan 2020 Review of intervention
24 Feb 2020 Development of materials- webinar etc for others
19 Oct 2020 Evaluation of programme. Development of sustainable model

Comments

  1. What a great concept! I'm a former swimming teacher and lifeguard if you have any related questions :)

    1. Thanks for this offer which is really appreciated. As a lifeguard do you see any challenges with this or ways to get non-swimmers to join?

  2. I also LOVE this idea - thinking about wider patient experience and the power of the group. Several thoughts (1) like anna, wider emotional and social outcomes (2) also cardiovascular fitness e.g. lung capacity, as it could be really helpful when thinking about spread to other patient groups (3) can you compare it to the same group of patients but who do the physio exercise on their own. My thoughts its that the group nature and the purpose of the physio exercise would increase adherence. Good luck

    1. Thanks for this feedback. We will give some thought to measuring further cardiovascular fitness and aspects of wellbeing.

  3. I think this is such a creative idea. Do you think this will help people support each other with body confidence issues and mental wellbeing too?

    What measures are you thinking you’ll use to capture success? I think this is a really interesting area and may be able to help you with thinking about how to capture some of the emotional and social outcomes if that’s useful?

    best wishes

    Anna 🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️🏊‍♀️

    1. Thanks for this -we will explore this further.

  4. As a Therapeutic Radiographer and a keen swimmer I really like this project. One of my swim buddies has had extensive surgery post breast cancer and I can anecdotally attest to the benefits swimming has provided in her rehab. I wonder if you might consider extending the scope of the swimming part of your project to include outdoor swimming rather than just pool swimming?  There is increasing evidence of the benefits of this for mental health as well as the physical aspects https://www.outdoorswimmingsociety.com/swimming-improves-mood-reduces-mental-health-symptoms/

     

    1. Guest

      Rachael Rowe 1 year, 9 months ago

      Thanks for this- we like this idea of outdoor swimming.

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