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Improving Equity and Access to Physical Activity Therapy in Palliative Care

It is now widely accepted that remaining physically active is beneficial for health, however for patients entering Specialist Palliative Care Service it appears that there is variation in physical rehabilitation offered, depending on individual diagnosis.

To increase the focus on physical activity for all patients, a 12 month project was undertaken with the support of NHS Tayside Allied Health Professional (AHP) Practice Development Scheme.

The project aimed to evaluate the impact of offering physical activity therapy for all patients based on their individual need.

***PAHA Award Winner 2014***

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How It Started

In response to Better Health Better Care 2007, a service development was initiated which resulted in an increase in patients with non-malignant conditions referred for rehabilitation.
This led the team to identify approaches which would be suited to this group of patients, such as the development of a pulmonary rehabilitation exercise group for patients with COPD.

In 2010, staff attended the National Macmillan Conference and learned of the evidence which existed to support exercise for improving the outcomes for cancer patients. A systematic review of the literature related to exercise for patients with a broad spectrum of advanced diseases, demonstrated that evidence exists and supports exercise for patients with advanced disease to improve their physical outcomes and quality of life.

What staff didn’t know was how best to introduce this evidence, without reducing resources from the current service!

The service aimed to be based on a person centred approach encompassing patient need and preference on how to keep active for as long as possible. There was also the potential for positive health behaviour change. Limited available research in this mixed patient group meant that determining practice for behaviour change was difficult.

With the direction of the NHS Tayside AHP Practice Development Scheme, (after a competitive interview process) in Sept 2012, staff planned and implemented a project to try to find out how best to introduce this evidence, which would help improve access and equity to rehabilitation for all patients living with advanced disease.

Partners Involved

After approved sponsorship from the service manager of Specialist Palliative Care Services, and the Allied Health Professions Director, the applicant undertook a competitive interview process to gain selection on the NHS Tayside AHP Practice Development Scheme led by the Allied Health Professions directorate.

Training was provided by a variety of experts and the intervention planned over a 6 month period followed by a supervised implementation and evaluation phase.

Mentorship was also offered to the applicant from Macmillan Scotland Move More Development Team and the National AHP Lead for Cancer Rehabilitation.

Improvement tools used to deliver the project included:
- literature review,
- process mapping,
- measurement plan,
- driver diagrams,
- patient IEC (Informing, Engaging & Consultation) plan
- ‘23 ½ hours’ video presentation and
- focus group discussion,
- emotional patient feeedback touchpoints,
- consultation of plans and leaflets design,
- stakeholder engagement plan,
- patient information leaflets,
- patient satisfaction questionnaire,
- staff information via monthly flyer and run charts.

Meetings took place with NHS Tayside Public Involvement Officer to assist the development of Informing, Engaging & Consulting (IEC) plan.

Informing:

Initially, staff presented the evidence to current patients using Dr Mike Evans “23 ½ hours” video followed by open discussion exploring patient views and preferences.

Nursing staff were given training on the benefits of promoting appropriate physical activity for this patient group.

All patients subsequently referred to the day care unit were (and continue to be) screened using the Scottish Physical Activity Questionnaire (Scot PASQ) and offered information on how to become more active using the Brief Intervention Script.

Meetings took place with all stakeholders, including managers and the broader MDT to ensure buy-in for this project.

Staff and partnes were kept updated by circulation of monthly flyers with updates and feedback requests.

Engaging:

Patient focus groups took place and all patients were encouraged to feedback on their views to becoming more active and the patient information leaflets. Consideration was given in developing the leaflets to ensure relevance for all levels of literacy.

Flip charts were placed in the day care centre asking patients to record which physical activity preferences.

Patient satisfaction questionnaires were issued before and after the group intervention.

Consulting:

Emotional touchpoints conveyed very powerful and positive feelings from patients who had completed the exercise class.

Patients were asked for their feedback on Macmillan Scotland’s three recommendations of physical activity – exercise classes, walking programmes and Chi Gung. This information was shared with Macmillan Scotland.

Patient views were explored on an ‘opt-in’ or ‘opt-out’ referral process.

Process

The Informing, Engaging and Consultation plan ensured that 100% of all patients who attended and all new referrals now receive advice on physical activity and opportunities to increase this.

This took place by:

• Changing documentation to ensure 100% screening of physical activity levels and patient’s willingness to become more active.

• Video presentation 23 ½ hrs – Dr Mike Evans,

• Focus group activity and open questions/discussion opportunities.

• Issuing Macmillan’s ‘Move More’ information packs and Paths for All leaflets.

• Issuing pedometers to patients who were keen to walk more.

• Asking patients for their feedback and views on level and types of physical activity they would prefer whilst attending the day care unit.

• Providing an exercise group - available for all.

• Chi gung and walking groups are planned in the New Year – including mapping out of local areas in the garden and surrounding internal and external areas. Staff and volunteers are to attend training in Jan to become walk leaders.

• A selection of physical activity leaflets and DVDs are always available for patients and carers to take home to increase knowledge and understanding of the importance of remaining physically active.

• Active links are formed with other local exercise groups (NHS and community) to ensure seamless care and raise awareness of the services provided in Macmillan Day Care.

• The promotion of physical activity for patients links in with Healthy Working Lives – aiming to encourage staff and volunteers to be physically active also.

Prior to the new approach to physical activity within the SPCS there was inequitable care provided. The physiotherapy service was based on treating referred patients in a 1-1 way and did not take into account the need for everyone to have access to a physical activity intervention or a choice in what that intervention may be and that it was based on diagnosis not need. In the past all patients (except COPD) patients were treated 1:1, now all patients can access group exercise as part of their therapy and individual need.

The increase in numbers of patients who attended the exercise class assists the service to meet the need for everyone to have equal access to a physical activity intervention and become more physically active.

Patients’ views were ascertained in various ways and the range and type of interventions identified, which meant that the service change during the improvement period ensured that patients’ preferences were met.

Presentations took place to local physiotherapy staff, local hospital palliative care team, local AHP leads, local public health directorate staff and a presentation at National Macmillan Conference 2012 to raise awareness of the strong scientific evidence which supports physical activity throughout life and that this should be based on need not diagnosis as is currently the case e.g. cardiac and pulmonary rehabilitation groups. (Better Health: Better Care 2007).

Results and Impact

The project has evidenced improvement in health outcomes for a person directly by documenting the following:

1. Scottish Physical Activity Questionnaire (mins/week of physical activity)

2. 6 minute walk test (sub-maximal test of endurance/fitness)

3. Timed up a go (balance/mobility)

4. Sit to stand (lower limb endurance)

5. Functional reach (balance)


Quality of Life:

1. Herth Hope Index

Balancing measure:

1. Palliative Performance Scale - indicates disease progression.

• 18 patients took part in total (average 4/11 patients who attended the day care unit took part in the exercise class) – 50 % dropped out due to disease progression.

• 7/9 patients demonstrated an increase in physical performance, Palliative Performance Scale and quality of life.

• 2 /9 patients demonstrated a decrease in physical performance, palliative performance scale but their ‘Hope’ increased.

• More patients were seen in a group setting than on a 1-1 which had patient benefits as well as improved staff efficiency.

• 3/10 patients indicated that taking part in an exercise class was important to them.

• 7/10 patients indicated that they would prefer other programmes such as walking, gardening or Chi Gung to help remain physically active.

• Patients reported their general physical activity levels improved after the intervention.

• All patients now have equal access to generic group exercise therapy based on their need and preference.

• Patients who took part demonstrated benefit, in line with the literature, from the now widely recommended intervention of appropriate exercise.

• Patients reported added support from taking part in a group activity which facilitated sharing and learning from others’ experiences.

• Patient feedback demonstrates that although an exercise class is important to some people; it is not important to everyone, as a result of this project we now know that many patients prefer walking programmes and have indicated interest in activities like Chi Gung and gardening.

• Patients reported they were significantly more active after the intervention than before and that their “confidence”, “knowledge” and “general ability” had improved.


The project has evidenced that it prevents people being exposed to unequal health outcomes by working with partners to help them provide equal services in the following ways:

Patients’ views were ascertained in various ways and the range and type of interventions identified, which meant that the service change during the improvement period ensured that patients’ preferences were met.

Patient views were explored on an ‘opt-in’ or ‘opt-out’ referral process.

The increase in numbers of patients who attended the exercise class assists the service to meet the need for everyone to have equal access to a physical activity intervention and become more physically active.

• Cancer patients who took part in the exercise class reported they wished they had received this intervention much earlier in their patient journeys and reported that they had spent the last few years “mostly sitting”. In contrast, almost all the COPD patient had been well educated to keep physically active and had good self –management skills.


The project advocates locally and nationally to change policy or legislation that will help to reduce health inequalities in the following ways:

The project demonstrates that there needs to be a more inclusive approach to physical activity for all patients prior to entering specialist palliative care services.

Meetings took place with local AHP managers to encourage all patients (especially cancer patients which is the single biggest group of palliative care patients) to have the same access to exercise therapy as COPD and cardiac patients.

Continual liaison took place with Macmillan Scotland to develop the exercise programme in line with their national plans which include exercise classes, walking programmes and Chi Gung for all patients and this resulted in plans to increase availability of these interventions locally.

This project has demonstrated that there needs to be a more inclusive approach to physical activity for all patients prior to entering specialist palliative care services.

This project requires to be spread across NHS Tayside and then tested in other areas of Scotland.

Lessons Learned

What would we do differently next time?
• Encourage earlier referral for exercise and self-management advice for patients diagnosed with life-limiting condition.

• Continue to use emotional touchpoints as a method of exploring patients’ experiences of ‘keeping active’ and participating in other physical activities rather than on ‘physiotherapy’ as not all interventions will be delivered by physiotherapist directly.

• Explore other outcome measures to understand how exercise affects people living with advanced disease.

• Identify and resolve any health inequalities within the current pathway.

Challenges? –
Identify the reasons behind the high drop out rate.

What's next for the project?

Recommendations for the future?
• Continue to screen all patients’ physical activity levels and readiness for change early after admission.

• All patients will continue to be fully assessed by the physiotherapist prior to undertaking exercise to identify risk.

• Work with other local partners to encourage all patients in NHS Tayside to have access to exercise as part of their initial treatment prior to referral to Specialist Palliative Care Services.

• Develop walking programmes, adapted Chi Gung and gardening activities in line with patient preferences and goals to facilitate health behaviour change.

• Train other NHS Tayside staff and volunteers to provide these interventions.

• Work with other local partners to encourage appropriate exercise for all patients on discharge from Macmillan Day Care.

• Encourage MDT engagement for ideas to encourage appropriate and achievable physical activity for patients living with
advanced disease.

• Spread this way of working to other SPCS in Tayside

What is this?

What is it about?

Where is this relevant?

When was this published?

4/7/2014

Lead Contact Name

Mandy Trickett

Organisation

Macmillan Specialist Physiotherapist, NHS Tayside

Phone Number

01382 423170

Email Address

mandy.trickett@nhs.net

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Comments

  • This is very interesting. Please can you send a copy to my work e mail. I have been looking at how to implement an exercise programme at Dorothy House for a while now and this is an inspiring piece of work. Well done

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  • A brilliant project that should inspire OT's to get involved. This type of programme is something that has the potential to be used in many different settings and client groups. MDT approach would be amazing and cover many life skill areas. Well done Mandy Trickett, a much deserved award.

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