Iris Cancer · PDF file · 2014-02-10Maggi Scott, Lorna Forrester, Joyce Gillespie,...

© Iris Cancer Partnership 2014

Iris Cancer Partnership

Scottish Scoping Survey

of

Massage Services

for

People Living with Cancer

Funded by The Big Lottery


Acknowledgements

Iris Cancer Partnership would like to thank, first and foremost, The Big

Lottery, whose support of this project made it financially viable to carry

out the Scottish Scoping Survey.

To the following people who generously gave their expertise, time and

guidance during the planning, fieldwork and writing of this Scoping

Survey:

Maggi Scott, Lorna Forrester, Joyce Gillespie, Grace McGill, Dr. Alex

Lewis, Mandy Orr, Carol Smith, Anne Millard, Anna Valente, Claire

Davidson, and Anne Douglas.

Iris also would like to thank and acknowledge the support from the staff

within the many organisations who took part in the surveys, and all the

patients and carers who took part in the 3 focus groups.


Contents

Executive Summary 1

1 – Introduction 5

1.1 – aims

1.2 – objectives

1.3 – outcomes

2 – Approach 7

2.1 – Scoping Survey methodology

2.2 – Organisational survey

3 – Iris’s strategy 9

4 – Scottish Cancer Statistics 11

4.1 - Profile of Scottish Cancer Statistics 2013 and predicted trends

5 – NHS Scotland and the Scottish Government’s policy 13

5.1 - Better Cancer Care 2008

5.2 - 2010 the Better Cancer Care Progress Report

5.3 - Transforming Care After Treatment, June 2013

6 – History of massage as part of cancer care in the UK 15

7 – Cultural and Demographic changes 17

7.1 - Demographic Profile of Scotland

8 – The models of delivering massage as part of cancer care support identified through the Scoping Survey

19

8.1 - Patient led initiatives - Identified through the 3 focus groups

8.2 - Hospice based services

8.3 - Hospital based services

8.4 - Cancer Support Centres

9 – Key Themes 23

9.1 - The benefits of massage

9.2 - Evidencing the reported benefits of massage

9.3 - Patients’ comments about benefits

9.4 - Research about the potential benefits of massage for people living

with cancer

9.5 - Final comment on the benefits from experts in the field of cancer

care massage

9.6 - Funding

9.7 - Geographic barriers

9.8 - Awareness raising for clinicians, patients, health clubs and spas

9.9 - Gaps in service provision

9.10 - Advice from Organisations Surveyed

9.11 - Surveyed Organisations Future Plans and Hopes

10 – The Way Forward 31

11 – Recommendations 33

12 – References 35

13 – Appendices 37

© Iris Cancer Partnership 2014 1

Executive Summary

The Iris Cancer Partnership commissioned a Scottish Scoping Survey to consult with a

wide range of people living with cancer and their use of massage. The survey identifies

their experiences, preferences, service requirements, gaps and barriers to the provision of

massage.

The aims are both to present an understanding of the needs and wishes of people living

with cancer, regarding their access to massage before, during and after their treatment,

and to assess the current level of service provision of free massage in Scotland for them.

40 organisations were surveyed using telephone and face to face interviews using the

Scoping Survey Questionnaire. 3 focus groups were run: 2 at the Scottish Conference of

Cancer Support Groups, in Glasgow in September 2013 and one at the Borders General

Hospital, in October 2013. The same exploratory prompt questions were used for each

group and all discussion was recorded. 24 people took part.

One third of the Scottish population who receive a diagnosis of cancer will use

complementary therapies to help manage their well being (1). The incidence of cancer in

the population of Scotland is increasing and will continue to do so with increased life

expectancy. Cancer is now a chronic illness as people live longer with better treatments.

The number of new diagnoses of cancer is increasing year by year. Cancer mortality

rates are falling as treatments improve and living with cancer is now viewed as a

chronic health condition. NHS Scotland figures show that 40% of people can expect to

have a cancer diagnosis in their lifetime.

Current NHS Scotland policy is to support and enable cancer survivors to live as

healthy a life as long as possible and to focus on care after treatment.

(Transforming Care After Treatment, TCAT) (2)

The Iris Scottish Scoping Survey extended from Orkney and Thurso in the North, to

Dumfries and Galloway in the South West, Aberdeen in the East, Melrose in the South, and

Barra in the West.


The Survey identified that the Central Belt, the North East, including Orkney and Shetland,

Thurso, Fort William, Stranraer and the Borders all had some massage services for people

living with cancer. Dumfries and Galloway had very little and the Highlands above

Inverness and the Islands of Coll, Tiree, Mull and Iona had none, except one centre in

Thurso.

There are many models of massage provision currently being undertaken, including

patient led initiatives

hospice based service

hospital based service

cancer support centres

There was a lot of variation in the level of service offered. 40% of the organisations

surveyed would like to increase their massage service as demand exceeds capacity.

People living with cancer reported many benefits experienced through having massage.

Significant support and improvement with anxiety and stress management, insomnia,

fatigue and body confidence was noted by patients.

Key barriers identified:

To have a massage in a private clinic costs from £35-50 per hour. 66% of the focus

groups stated having to pay for a massage would be a barrier and they would not be

able to afford any massage in these circumstances.

The Macmillan Report "Cancer’s Hidden Price Tag" (3) highlights that 33% of people

diagnosed with cancer lose significant income as a result of their illness, averaging

£860 per month. Having a reduced income and increased bills such as heating and

transport causes stress and anxiety for many cancer patients.

living in a rural community makes accessing massage difficult

identifying a qualified therapist

clinicians are not always aware of current research findings about the benefits of

massage and that comfort orientated gentle massage cannot spread cancer.

focus groups reported experiences of spas and health clubs refusing any massage to

people who have had cancer.

many organisations identified accessing funding a barrier to expanding their services to

meet demand.


Recommendations

1. Create an Iris Scottish Volunteer Massage Therapist Project. Level 1 trained Iris

Massage Therapists to be matched with Partner Organisations to offer a minimum of 1

years’ service as a volunteer Cancer Care Massage Therapist.

Many newly trained Iris therapists have indicated they would greatly value being

mentored when they initially work with people with cancer, to gain confidence in this

specialist field of work. Being part of the Iris Volunteer Scheme would support them.

Many organisations would like to offer more massage services to meet demand but are

financially constrained. Having the Iris Volunteer therapists would help increase

service provision and their existing therapists would become mentors of the Iris

Volunteers. Many organisations surveyed, across Scotland, some in diverse settings,

would like to be part of the Iris Volunteer Scheme.

2. Support and develop, in partnership with other key cancer organisations, further

massage services in rurally disadvantaged areas of Scotland for people living with

cancer. For example, in Oban and the Hebridean Islands of Coll, Mull, Iona, and Tiree,

Ayrshire, and Dumfries & Galloway. For the islands a mobile massage and well being

service is the best model of delivery. Potential partners in these regions have been

identified through this survey.

3. Work in partnership with key cancer support organisations, to develop their massage

services where demand is greater than the level of service currently provide. Potential

partners have been identified whilst carrying out this survey.

4. Raise awareness and education through dissemination of the Iris Literature Review

about the benefits of massage for people living with cancer at all stages in their

experience, written in 3 different formats for the general public, clinicians, and

therapists.

5. Raise awareness and dissemination of the Iris Scottish Scoping Survey and the Iris

curriculum of specialist massage training to health clubs and spas, to enable therapists

to confidently work with people living with cancer.

6. Continue to consult with patients at all stages in their cancer journey, to learn more

about their experiences and preferences of having massage.

7. Revisit this study in 5 years and update the findings


1 – Introduction

The Iris Cancer Partnership (Iris) is a Scottish charity, formed in 2010, with the goal of

increasing the availability of free massage for people living with cancer throughout

Scotland.

In support of its goal, Iris has developed, and delivers, a specialist curriculum of training

for massage therapists to safely work with people with cancer. With patients at the heart of

its work, Iris works in partnership with cancer care professionals and support

organisations.

The Scottish Scoping Survey was commissioned to understand the wishes and needs

of people living with cancer about massage relating to their experiences, preferences and

service requirements and to identify any gaps and barriers in service provision

1.1 – Aim

The overall aim of the Scottish Scoping Survey is to present an understanding of the needs

and wishes of people living with cancer regarding access to massage to support them

before, during, and after treatment. This is balanced against an assessment of the current

provision throughout Scotland of a free service in massage suitable for supporting people

living with cancer.

1.2 – Objectives

To consult with a sample of people living with cancer across all areas of Scotland to

learn of their experiences, preferences and of any barriers in accessing massage.

To establish an understanding of the current level of free massage provision in a cross

section of the key organisational settings, including hospices, hospitals, cancer support

centres and voluntary sector projects.

To establish whether there are any geographic and/or demographic gaps in service

provision.


To establish whether the current supply of free massage for people living with cancer

matches the demand from patients.

To identify any key barriers in service provision and patients’ experiences in providing

and accessing free massage.

To identify any opportunities for Iris to create new partnerships with other

organisations for collaborative work to support the development of free cancer care

massage services for people living with cancer.

1.3 – Outcomes

People with cancer highly value having free massage therapy.

All organisations providing this service are committed to providing the services, despite

facing barriers such as securing funding and not being able to always match the

demand for the service.

There are areas of Scotland with significant gaps in service provision, particularly the

North West, far North East Highlands, and Dumfries & Galloway areas.

Key opportunities for partnership between Iris and other organisations emerged:

Use of the Iris Register of Level 1 trained Massage Therapists

Creation of an Iris Volunteer Massage Therapist Project

Creation of new free massage services for people living with cancer in rural areas

of Scotland, beginning in the North West.

Sponsorship by organisations of local therapists to take the Iris Level 1

Curriculum of training in Massage for People Living with Cancer.


2 – Approach

The methodology adopted for this study comprised a mix of focus groups, questionnaires,

and face to face meetings with a wide variety of organisations and charities, who provide or

wish to provide massage services for people living with cancer.

2.1 - Scoping Survey Methodology

A questionnaire was designed to be used in telephone or face to face interviews with the

key cancer support organisations identified (a list of organisations is provided in

Appendix 1).

Questions were designed to give an accurate summary of the current complementary

therapy services offered by an organisation including age of the project, opening times,

level of provision, profile of referrers, identification of any key barriers and advice to

any new service.

Visits to Inverness, Aberdeen, Glasgow and the Borders were made to carry out

interviews. Telephone interviews were also carried out. The same questionnaire was

used for both methods. A copy of the Scoping Survey questionnaire can be found in

Appendix 1.

3 focus groups were run. All sessions were recorded and the same questions were used

by the facilitator for all 3 groups (see Appendix 2).

2 focus groups were run at the Scottish Conference of Cancer Support Groups, held on

the 13th & 14th September 2013. This annual conference attracts organisations

representing a wide demographic diversity across Scotland. Conference delegates

selected attending these focus groups from a range of workshops offered in the

Conference Programme. Patients came from throughout Scotland and the 2 groups

included people from the North East, North West Highlands & Islands, and the Central

Belt.


The final focus group took place in the Borders General Hospital, held on 4th October

2013, with people who lived throughout the Borders. Participants were identified by the

Lavender Trust. The focus group questions can be found in Appendix 2.

In total 23 people took part in the 3 focus groups drawn from all areas of Scotland.

All discussions were recorded and all groups were asked the same exploratory

questions during discussions.

2.2 - Organisational Survey

40 key cancer support organisations that provide free massage were identified (as listed

in Appendix 1), including hospitals, hospices, cancer support organisations and

voluntary sector projects.

A Scoping Survey Questionnaire (Appendix 3) was used for both the telephone and face

to face interviews.

The questionnaire asked information about:

the history of the service,

the current level of service provision,

the referral pathway,

evaluation and monitoring systems,

details of any barriers in providing the service,

links with other cancer support organisations,

anything they may do differently if starting again,

future plans, and

any advice to a new service.

Appendix 1 shows a map of Scotland with each participating organisation’s location

shown.


3 – Iris’s Strategy

Iris’s charitable benefit is “to provide and support other organisations in the

provision of massage therapy specially adapted for those diagnosed with

cancer.”

Iris is an organisation founded on partnership, with its members and volunteers being

drawn from a multi disciplinary group:

people who have had or are living with cancer

clinicians

researchers

cancer support centres / hospices, and

massage therapists

Patients are at the heart of all the work Iris carries out. This is achieved by a 3 part

strategy.

Create supply:

Create and deliver a specialist Oncology Massage training curriculum.

Create a register of Iris trained massage therapists for use by patients, hospitals,

hospices and cancer centres.

Meet demand:

Deliver free massage for people living with cancer.

Continuously improve:

Conduct surveys with patients to understand their needs and wishes.

Undertake various approaches to evaluation and research, creating resources for

clinicians, patients and therapists, to make informed choices about massage.


4 – Scottish Cancer Statistics

4.1 - Profile of Scottish Cancer Statistics 2013 and predicted trends

Every year, about 30,000 people in Scotland discover that they have cancer, and trends

predict that the number is likely to rise to almost 35,000 in 2016-2020 (4).

In 2001, 26,150 new diagnoses were made rising to 30,125 in 2011 (4).

The total number of people diagnosed with the disease is increasing year on year,

largely due to the increasing number of elderly people in the population and the fact

that life expectancy is increasing.

Mortality fell by 11% between 2001 and 2013 (4).

Over the last twenty years, almost all cancers have shown improvement in survival five

years after diagnosis (4).

Living with cancer is now viewed as living with a chronic health condition as survival

rates keep increasing.

NHS Scotland figures show that 2 in 5 people can expect to have cancer in their lifetime

(4).

The picture now is that many more people will continue to be diagnosed with cancer and

this number will rise significantly. At the same time, survival rates are improving,

significantly due to improved treatments and earlier detection, leaving more people living

with cancer and the after effects both physically and psychologically.


5 - NHS Scotland and the Scottish Government’s policy

5.1 - Better Cancer Care 2008

Better Cancer Care 2008 set out key Scottish Government strategy and action plans for

managing both the increasing prevalence of cancer within the Scottish population and

the fact that, as many cancer patients were now surviving much longer, the disease was

changing for many to become a chronic long term health condition (5).

Section 7 of the Better Cancer Care Plan highlighted the need for a change in approach

to the emphasis becoming more of a partnership approach, between patient and the

varying health professionals.

It was recommended that patient self-care partnerships be developed with the varying

healthcare support staff to provide "lifestyle choices and options that might support the

patient in considering what they can be doing for themselves"

5.2 - 2010 the Better Cancer Care Progress Report

The Progress Report noted that there has been a significant cultural shift towards a

greater emphasis on the individual’s role as the key decision maker in their care and

towards more effective partnership working amongst healthcare, social care and the

voluntary sector (6).

5.3 - Transforming Care After Treatment, June 2013

The Transforming Care After Treatment (TCAT) programme is a partnership between the

Scottish Government, Macmillan Cancer Support, NHS Scotland and local authorities to

support a redesign of care following active treatment of

cancer. http://www.scotland.gov.uk/Topics/Health/Services/Cancer/TCAT (2)

The aim of the programme is to support and enable cancer survivors to live as healthy a

life as possible for as long as possible.

http://www.scotland.gov.uk/Topics/Health/Services/Cancer/TCAT


Critical to the success of TCAT will be the inclusion and integration of services across

more than one sector, particularly with regard to managing the transition from acute to

community.

The world of cancer has changed; earlier detection and better treatments mean many

more people are surviving.

Services to support people after cancer treatment have not kept up with these changes.

The challenge now will be transforming care after cancer treatment and doing more to

support people with the physical, emotional and financial issues they face.


6 - History of massage as part of cancer care in the UK

In 2004 the National Institute for Heath and Clinical Excellence (NICE) published

"Guidance For Improving Supportive and Palliative Care for Adults with Cancer" in

response to the growing concern that patients were choosing to have Complementary

Therapies, including massage, without access to clear information and guidance about

issues such as contraindications and the training of therapists (7).

NICE noted that in the UK:

32% of cancer patients used massage as part of their self management

36% of cancer support services in hospices and hospitals had massage available for

their cancer patients.

Key recommendations in the NICE guidelines were:

"Complementary therapies, either commissioned by the NHS or provided in NHS

facilities, are provided safely by trained practitioners who are sufficiently aware

of clinical problems and psychological issues with which patients with cancer can

present."

Patients should be empowered to make their own decisions about complementary

therapies and therapists through the provision of high quality information.

"The fear that touch modalities will cause cancer to spread to other parts of the body is no

longer an issue. Science now understands this disease spreads due to genetic mutation, not

because of mechanical forces such as massage or exercise. Metastasis, the spread of cancer

to distant sites, is a complex, biochemical process orchestrated by genetic mutations".

"Gentle massage does not increase vascular flow or lymphatic circulation any more than

daily living activities such as exercise, shopping, or taking a warm bath. The spread of one’s

cancer happens during sleep and rest, as well as daily living".

Gayle MacDonald (2007) “Medicine hands: Massage for People Living with Cancer” (8).

There has been significant expansion in the last 10 years in the number of massage

services available in diverse settings for people living with cancer. This is reflected in

Scotland in increased cancer care massage services in hospital, hospice, voluntary

sector projects and patient led cancer support groups.


Since 2010, the Iris Cancer Partnership has offered a specialist curriculum of massage

for massage therapists in Scotland (see Appendix 4) to teach them how to adapt

traditional massage techniques when supporting people living with cancer. The

curriculum also teaches other skills such as:

Communication Skills, using the Maguire technique

Lymphoedema Awareness

How to write Reflective Papers

Over 200 therapists in Scotland have now completed the 3 day ‘Massage for People Living

with Cancer’ training course.


7 - Cultural and Demographic changes

The focus used to be on clinical treatment of cancer with less regard for the emotional and

social issues created as result of the various treatments.

During the last 20 years, patients have been increasingly using massage and other

complementary therapies to manage many of the emotional, psychological and

physiological effects of having cancer and cancer treatments.

People are now living longer following their cancer diagnosis thanks to progress in

treatment and there is a much more widespread awareness amongst patients of the role

massage can play in supporting a person before, during and after treatment.

The notion of well being as an important aspect of life has entered the mainstream.

Questions are now included in the Official Census asking about an individual’s self-rated

sense of well being in areas such as family, friendships, work and health.

7.1 - Demographic Profile of Scotland

In 2011 the population of Scotland was 5,295,000.

70% of those people live in the Central Belt, extending from Edinburgh to Glasgow, and

to Paisley, Stirling, Falkirk and Dundee (9).

In the North East and North West Highlands the population density is 8 people /

square kilometre, one of the most sparsely occupied areas in Europe. It can be 50-70

miles between homes (9).

Scotland has over 100 inhabited islands. Many of these involve long journeys to the

mainland and the populations are scattered in very rural isolated landscapes (9).

The Iris Scottish Scoping Survey extended from Orkney in the North East, to Fort

William in the North West, Dumfries in the South West and Melrose in the South.

Cancer support services are provided through the network of the main hospital

Oncology Departments, with day care chemotherapy often available in the smaller

hospitals. Transplant and stem cell treatments are only available at the Beatson


Hospital, Glasgow. For many people with cancer living outside the 7 major cities of

Scotland, having to travel away from home and loved ones to stay over to access their

treatments can be an additional stress. Many hospitals and hospices do provide

accommodation.


8 - The models of delivering massage as part of cancer care

support identified through the Iris Scottish Scoping

Survey

8.1 - Patient led initiatives - Identified through the 3 focus groups

Patient support groups are prevalent throughout Scotland and many have been

running for over 20 years.

Many cancer support groups organise a monthly visit by a massage therapist to their

group, to offer comfort orientated massage to their members.

One group brings a therapist from a neighbouring island, paying their travel costs.

Several support groups raise funds and operate a scheme to subsidise or pay in full for

members to access massage.

A few groups organise a well being event annually, where members can come and

access massage and other complementary therapy treatments.

One cancer support centre, founded by a cancer patient, has gone on to become a

flagship cancer support centre, offering complementary therapies, counselling and

drop in support.

8.2 - Hospice based services

Hospices offer complementary therapies extensively, mainly in the daytime. There is

often a mix of paid and volunteer therapists, with a co-ordinator organising bookings,

support and supervision.

The massage service is often also available to families, friends and carers of the person

with cancer.

The number of massage sessions a person is entitled to depends on the demand for

massage sessions, matched to availability of funding and / or volunteers.


8.3 - Hospital based services

Massage for cancer patients is available in many hospitals in Scotland. Some services

have operated for over 15 years. Some are newly established, for example Royal Forth

Valley 18 months ago.

In some hospitals, where the massage service is well established, the service is provided

both on the wards and in the chemotherapy suites. In other hospitals, the service is

concentrated in the chemotherapy suites, often sited within Macmillan centres located

in the hospitals.

The Hospital based massage services can be a mixed team of paid and volunteer

therapists, paid therapist teams only, or volunteer therapist teams only.

The extent of the massage service offered for people with cancer in hospitals varies

immensely. It ranges from a couple of hours a week to full time; day time Monday to

Friday with some evening and weekend sessions available, though this is limited to a

couple of hospitals.

8.4 - Cancer Support Centres

45% of the organisations surveyed are voluntary sector cancer support centres.

3 of these organisations are Macmillan funded.

Massage and other complementary therapies are offered, often for 3 days per week,

along with counselling, drop-in support, benefit advice and miscellaneous activities.

The Borders has a large project delivering massage services for people living with

cancer called the Lavender Touch Project. This is a patient centred service, as they

choose where they would like to have their massage. Choices include at their home, the

Lavender Touch therapy room, or at a local GP practice. The Lavender Touch has

partnerships with 17 GP practices throughout the Borders, whereby therapists can use a

room at the practice to give a massage. This model of service delivery works very well in

a large rural area.

6 of the organisations surveyed are part of a large North East Scotland cancer support

services organisation, CLAN, spread along the North East, Orkney and Shetland. CLAN


has a large central project based in Aberdeen, with a substantial complementary

therapies service and many other support services. CLAN also has established smaller

satellite projects based in local communities in the North East and islands of Orkney

and Shetland, working often in partnership with local patient led cancer support

groups.

2 of the Organisations surveyed that provide massage are Maggies Centres. Taster

sessions only are offered at these centres with a signposting system for clients who want

to access more sessions. Maggies clients are told about the Iris Register of Level 1

qualified therapists along with any local massage service for people living with cancer.

40% of the Organisations surveyed would like to increase their massage service

capacity as demand exceeds the number of sessions available.

The main cities of Scotland, Glasgow, Edinburgh, Dundee, Aberdeen, Inverness and

Stirling have massage cancer care services available.

There is variation regarding paid and volunteer therapists. Some centres only have paid

therapists, some are volunteer only therapist teams and some are a mixture of both

paid and volunteer therapists.


9 - Key themes

9.1 - The benefits of massage

A key finding of the Iris Scottish Scoping Survey is that all organisations and focus group

members spoke with confidence and commitment about the many benefits for people

living with cancer of being able to have massage at any stage in their cancer experience.

The massage services offered are always busy, usually requiring a booking system and a

defined package of appointments. Patients can be referred again if their health condition

would benefit, e.g. with a palliative diagnosis.

Many organisations would like to offer a more extensive massage service for their patients

and clients. Funding difficulties are a barrier to realising this.

9.2 - Evidencing the reported benefits of massage

“Evidence based practice requires integration of the best external evidence with individual

expertise and the patients choice”.

“Evidence based medicine, what it is and what it isn't”, (1996), BMJ.Sackett, Haynes, Rosenburgh &

Richardson (10).

NICE defines supportive care in their 2004 Guidelines as:

“Supportive care is that which helps the patient and their family to cope with cancer and

the treatment of it from pre-diagnosis, through the process to diagnosis, treatment to cure,

continuing illness or death into bereavement” (7).

Massage is one of the oldest touch therapies. It is a form of complementary therapy, used

by massage patients alongside their medical care and treatments, and patients have been

reporting their own experience and the many benefits for decades. Patients who use

massage typically consider it a vital part of their supportive care.


9.3 – Patients’ comments about benefits, from the Scoping Survey and clinics

Anxiety management: "I would recommend massage to anyone experiencing cancer.

The day before my first chemotherapy I was so frightened I didn't think I would go. I

had a massage and afterwards I felt so calm. She calmed me with her touch and I was

able to face my chemotherapy the next day" - Borders Focus Group, 4th October 2013

Stress Management: "Massage helps me so much with my tension. I find it relaxing,

deeply relaxing." Scottish Conference of Cancer Support Groups Focus Group, 13th

September 2013

"A wonderful massage that eased my tension and stiff joints" Royal Forth Valley

Hospital patient, December 2013

"I could feel all the tension drain away I felt like the cat that got the cream" Western

General Hospital patient, Edinburgh, December 2013

"If I don't have my massage I feel the tension building and I really miss it." Breast

Cancer patient, East Lothian, November 2013

"The massage is so relaxing. It makes you feel like you are on a cloud" Breast Cancer

patient, aged 71, East Lothian

Symptom Management: "I was so embarrassed by my hair loss. But when I had my

massage, she was so reassuring. She had lots of experience of this and I felt wonderful

afterwards" Borders Focus Group, 4th October 2013

"The skin on my feet had broken and peeled due to my chemotherapy for my bowel

cancer. Having those massages every week really helped me cope with the stress,

anxiety and tensions of this problem" Tom, Edinburgh, 10th December 2013

"It's hard to sleep when you are so worried about everything. My massages really

helped me with the insomnia. I would get a great night’s sleep on massage days" Mary,

Edinburgh, December 2013

"The men who have gone for their massages have been really surprised at how

beneficial and helpful they were in helping them through to recovery" Hebridean Men’s

Cancer Support Group, Scottish Conference of Cancer Support Groups, 13th Sept 2013

"I have fibromyalgia and am very sensitive to touch, but I loved it. The therapy helped

me through some very difficult treatments." Edinburgh, 2013


"The therapy helped me through some very difficult treatments. I cannot emphasize

how beneficial it was." Edinburgh, 2013

"It made me feel revitalised." Edinburgh, 2013

"At my chemotherapy session the day after my arm massage, the nurse commented that

the needles went in without difficulty for the first time in ages. It was such a relief" -

breast cancer patient, 39, Scottish Borders

"I feel energised and better able to cope with what the day throws at me after the

massage" - prostate cancer patient, 66, Coldstream, Scottish Borders

"I never knew that such light touch massage could affect me so deeply. Amazing" -

breast cancer patient, 58, Scottish Borders

9.4 - Research about the potential benefits of massage for people living with

Cancer

Iris has published the results of a systematic review of recent literature, 2008 onwards,

on studies into the evidence on the benefits and effectiveness of massage for people

living with cancer. It can be found on the Iris website:

http://www.iriscancerpartnership.org.uk/Research/LiteratureReview.aspx (11)

The review found, for people from a range of different cancer types, massage can

produce benefits related to: anxiety, mood disturbance, well being, stress, fatigue, help

with coping, relaxation, nausea and sleep.

9.5 - Final comment on the benefits from experts in the field of cancer care

Massage

"Less pain, anxiety, nausea, better sleep and more energy to add to their quality of life.

That is what people with cancer seek."

Gayle MacDonald, author of ‘Medicine Hands: Massage for People Living with Cancer’ (8)

“Massage offers a safe and warm holding place for the person with cancer. Deep human

compassion and caring are communicated without words and without threat. It is a gentle,

non–invasive form of therapy. It addresses the whole person in a gentle, human and

http://www.iriscancerpartnership.org.uk/Research/LiteratureReview.aspx


uncomplicated way. The essential elements of massage are both simple and profound. In

its essence it is touch. Touch is a vital and basic form of communication, conveying

nuances of feeling, often more expressively and effectively than verbal communication."

Patricia McNamara, 1995 (12).

9.6 – Funding

Organisations are committed to offering a free service to their clients, aware of the

financial pressures that come with a cancer diagnosis.

Whilst 100% of the organisations stated that their massage services were secure due to

their commitment to raise the funds to pay for the service, they reported that fund raising

requires constant energy and creativity.

To have a massage in a private clinic costs from £35-50 per hour. 66% of the focus groups

stated having to pay for a massage would be a barrier and they would not be able to afford

any massage in these circumstances.

The Macmillan Report "Cancer’s Hidden Price Tag" (3) highlights that 33% of people

diagnosed with cancer lose significant income as a result of their illness, averaging £860

per month. Having a reduced income and increased bills such as heating and transport

causes stress and anxiety for many cancer patients.

70% of the organisati0ons surveyed would like to develop additional services to meet

demand in the provision of massage. However, the challenges of fund raising to maintain

existing services already absorbs significant time and effort (see Appendix 5, table 5).

9.7 - Geographic barriers

For people living in a rural community in Scotland who have cancer, accessing

massage can be very difficult. All the patient focus groups noted this. Staff with many

organisations surveyed also noted awareness of this.

This is not due to a lack of demand from patients but more due to a lack of specially

trained therapists in these areas and the challenges of the geographic distances

between homes.


Appendix 5 from the Iris Scottish Scoping Survey - Table 1 shows 100% of patient focus

groups and 17.5 % of organisations (Table 2) identified geography as a major barrier to

accessing massage.

Table 2 - Organisational Barriers from the Iris Scottish Scoping Survey shows that

12.5% of the organisations found identifying qualified therapists a key barrier. These

organisations were all located in rural areas of Scotland.

It is a concern of the ‘Friends of the Beatson, Glasgow Complementary Therapies

Service’ that many patients who use their therapies service leave to go home to their

rural community and can find no local service.

The Friends of the Beatson Service has an unusually broad perspective, as patients come

from all over Scotland to have their transplant and stem cell treatments at the Beatson.

The key areas where geography is a barrier and cancer care massage services are very

limited or non-existent are:

Dumfries and Galloway.

North West Highlands and Islands, particularly the area above Fort William and the

Islands of Coll, Tiree, Iona and Mull

North East Highlands above Inverness.

Distances between homes can be up to 50 miles and more, with difficult terrain and the

risk of being cut off in winter. The distance to travel to the nearest town or city with a

massage facility can be too prohibitive in time and cost, not to mention potentially too

taxing for someone undergoing treatment.

9.8 - Awareness raising for clinicians, patients, health clubs and spas

Clinicians, particularly consultants, are not aware of the current research findings

regarding both the benefits of massage and that there is no evidence that properly

adapted massage does not cause the spread of cancer. This is a barrier shared by both

the patient focus groups and the organisations survey results (Appendix 5 Tables 1 & 2,

12.5% of organisations and 100% of focus groups).


Some people living with cancer are not aware it is possible to safely have massage. If

their health care team are not aware, and unless they find massage through one of the

organisations offering it, they are unlikely to know about it.

Many spas and health clubs do not have massage therapists in their teams who have

been trained in specialist cancer care massage. Most have a policy of not allowing

anyone who has had cancer to have any massage treatments (Appendix 5, Table 1

66.6% of focus groups).

Many people with cancer report being given spa or health club vouchers as gifts by

friends and family. The experience of being refused massage has profoundly upsetting

effects for a person, who may well have already had to undergo invasive treatments,

and this can be very difficult to come to terms with. The public rejection of the patient

because they have had cancer is a very difficult experience.

Some patients had asked their consultant if having a massage would be okay and some

were told no, it could spread cancer, or that the clinician did not know enough to make

a judgement.

Some organisations noted that they did not receive any or many referrals from

clinicians, particularly consultants.

100% of the patient focus groups in the Iris Scottish Scoping Survey had members who

had not known it was possible to have safe massage.

66% of the patient focus groups in the Iris Scottish Scoping Survey, Table 1, cited not

knowing how to find trained therapists who could safely work with people living with

cancer as a barrier.

Some organisations said they would like to be able to present to the consultant teams

about the benefits of massage but did not know how to do this.

Table 3 from the Iris Scottish Scoping Survey identifies the referral routes for all

patients using an organisations’ services.

71% of organisations have referrals from patients self-referring.

67 .5% of organisations have referrals from nursing staff.

50% of organisations have referrals from Macmillan Nurse specialists

35% of organisations have referrals from consultants.


9.9 - Gaps in service provision

The Iris Scottish Scoping Survey Organisation interviews found that the Central Belt,

the North East as far as Thurso, and Fort William all had some massage cancer care

service provision, in diverse settings.

Dumfries and Galloway did not have any significant massage cancer care services.

Above Argyll and Bute (apart from services based in Fort William, Oban and Thurso)

there is no massage cancer care service. The islands of Coll, Tiree, Iona and Mull also

do not have any cancer care massage services.

Above Inverness, the Highlands does not have cancer care massage services apart from

a localised drop-in group near Inverness and a cancer support centre in Thurso.

9.10 - Advice from Organisations Surveyed

Organisations in the Iris Scottish Scoping Survey were asked what advice they would

give to a new service.

Table 4 from the Iris Scottish Scoping Survey details the responses.

The key advice is:

To start slowly.

Raise awareness with all the team involved in patient care.

Plan well.

Have a therapies Coordinator.

Have realistic expectations.

Build trust.

Build networks.

Have a booking system.


9.11 - Surveyed Organisations Future Plans and Hopes

All the organisations interviewed in the Iris Scottish Scoping Survey aspired to refine and

improve their services and many hoped to find ways to increase their massage for people

with cancer service capacity. These plans range significantly:

moving into new premises

increasing the number of clinics

running monthly drop ins in remote areas

beginning to develop a volunteer massage therapist service

developing more ward services

launching new pilot services in hospitals

conducting a Feasibility Study on running a well being road show for Island

communities

developing new services in new areas of Scotland


10 - The Way Forward

The current picture of massage services for people living with cancer in Scotland is of a

range of services offered in diverse settings, including hospices, hospices, cancer support

centres, community libraries, venues arranged by cancer support groups and therapists’

private practices.

Patients with cancer enjoy their massages, they want to know:

how to access massage therapists who can work with them at any stage in their cancer

experience

how to find and access therapists who have the experience and qualifications to work

safely with them

to be able to choose the settings in which they can have their massage.

There has been a significant growth in the number of projects offering massage for people

living with cancer over the last 5 years. Table 5 includes details of the ages of all the

projects surveyed:

47% of the Organisations are 1-5 years old

17.5% of the Organisations are 5-10 years old.

17.5% of the Organisations are 11-15 years old

12.5% of the Organisations are over 16 years old

At least a third of people diagnosed with cancer will choose to have complementary

therapies, and massage is by far the most popular choice.

Cancer Research UK http://www.cancerresearchuk.org/cancer-help/about-cancer/

treatment/complementary-alternative/therapies/massage-therapy (Dec 2013)

From the focus groups and the organisations interviewed in the Iris Scottish Scoping

Survey it is clear that the demand for massage for people living with cancer is greater

than ever, and it can be predicted this will rise as the number of people diagnosed with

cancer grows due to increased life expectancy, the baby boom generation reaching the

typical age for developing cancer, and improved treatment outcomes.

There is a gap in awareness amongst some oncology clinicians, particularly the

consultant profession, of the current research knowledge about both the benefits of

http://www.cancerresearchuk.org/cancer-help/about-cancer/%20treatment/complementary-alternative/therapies/massage-therapy

http://www.cancerresearchuk.org/cancer-help/about-cancer/%20treatment/complementary-alternative/therapies/massage-therapy


massage and the prevalence of massage therapists in Scotland, who have taken the Iris

specialist “Massage For people Living with Cancer” training. There are over 200

therapists who have taken this training in Scotland, at December 2013, and many are

working with cancer patients in a variety of settings.

Funding is a challenge. All of the complementary therapies services with one exception

constantly have to fundraise to provide the service despite the value of the service to the

clients and the benefits gained by them being so evident. This takes a lot of time and

effort.

One NHS Health Board funds massage services in several hospital settings.

"As with many types of complementary therapies, one of the main reasons that people with

cancer use massage is because it helps them feel good. It is a way they feel they can help

themselves. Massage for people with cancer is promoted as a natural way to help you relax

and cope." (www.cancerresearchuk.org/cancer-help/about-cancer/

treatment/complementary-alternative/therapies/massage-therapy Dec 2013, (1))

Knowledge is inconsistent amongst clinicians and patients about the benefits of

massage for managing some of the difficult symptoms of treatment and illness for the

person with a cancer diagnosis.

There are gaps in availability of massage in Scotland due to geographic barriers,

financial resources and a lack of suitable trained massage therapists in these areas.

50% of the organisations surveyed have indicated they would like to work in

partnership with Iris in diverse ways including:

having Iris Volunteer Massage Therapists as part of an Iris Volunteer Therapist

project

a joint partnership for new projects within existing services

sponsorship of local massage therapists to do the Iris training,

Support in awareness raising by forming a partnership approach to clinicians,

particularly GPs and Consultants

Help to identify Iris trained massage therapists for new service developments.


11 – Recommendations

1. Create an Iris Scottish Volunteer Massage Therapist Project. Level 1 trained Iris

Massage Therapists to be matched with Partner Organisations to offer a minimum of 1

years’ service as a volunteer Cancer Care Massage Therapist.

Many newly trained Iris therapists have indicated they would greatly value being

mentored when they initially work with people with cancer, to gain confidence in this

specialist field of work. Being part of the Iris Volunteer Scheme would support them.

Many organisations would like to offer more massage services to meet demand but are

financially constrained. Having the Iris Volunteer therapists would help increase

service provision and their existing therapists would become mentors of the Iris

Volunteers. Many organisations surveyed, across Scotland, some in diverse settings,

would like to be part of the Iris Volunteer Scheme.

2. Support and develop, in partnership with other key cancer organisations, further

massage services in rurally disadvantaged areas of Scotland for people living with

cancer. For example, in Oban and the Hebridean Islands of Coll, Mull, Iona, and Tiree,

Ayrshire, and Dumfries & Galloway. For the islands a mobile massage and well being

service is the best model of delivery. Potential partners in these regions have been

identified through this survey.

3. Work in partnership with key cancer support organisations, to develop their massage

services where demand is greater than the level of service currently provide. Potential

partners have been identified whilst carrying out this survey.

4. Raise awareness and education through dissemination of the Iris Literature Review

about the benefits of massage for people living with cancer at all stages in their

experience, written in 3 different formats for the general public, clinicians, and

therapists.

5. Raise awareness and dissemination of the Iris Scottish Scoping Survey and the Iris

curriculum of specialist massage training to health clubs and spas, to enable therapists

to confidently work with people living with cancer.

6. Continue to consult with patients at all stages in their cancer journey, to learn more

about their experiences and preferences of having massage.


7. Revisit this study in 5 years and update the findings.


12 - References

1. Cancer Research UK http://www.cancerresearchuk.org/cancer-help/about-cancer/

treatment/complementary-alternative/therapies/massage-therapy (Dec 2013)

2. Transforming Care after Treatment, Scottish Government/Macmillan Policy, June

2013 http://www.scotland.gov.uk/Topics/Health/Services/Cancer/TCAT (Dec 2013)

3. http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Costofcancer/

Cancers-Hidden-Price-Tag-report-England.pdf

4. http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics/ (Dec 2013)

5. Better Cancer Care - An Action Plan, Scottish Government, Oct 2008,

ISBN 978-0-7559-5857

6. Better Cancer Care, Progress Report, Scottish Government, 2010.

7. National Institute for Health and Clinical Excellence Guidelines for Supportive and

Palliative Care for adults with cancer, 2004

http://guidance.nice.org.uk/CSGSP/Guidance/pdf/English (Dec 2013)

8. “Medicine hands: Massage Therapy for people with cancer” Gayle MacDonald, 2nd

edition, 2007.

9. Scottish demography

http://www.scotland.org/about-scotland/scotlands-geography (Dec 2013)

10. “Evidence based medicine, what it is and what it isn't”, Sackett, Haynes, Richardson

and Rosenberg” BMJ 1996, 312.71

11. Iris Literature Review, published May 2013.

www.iris.cancerpartnership.org.uk/research (Dec 2013)

12. “Massage For People Living with Cancer” Booklet, Patricia McNamara, 1994.

http://www.cancerresearchuk.org/cancer-help/about-cancer/%20%20%20%20%20%20%20%20%20%20%20%20treatment/complementary-alternative/therapies/massage-therapy

http://www.cancerresearchuk.org/cancer-help/about-cancer/%20%20%20%20%20%20%20%20%20%20%20%20treatment/complementary-alternative/therapies/massage-therapy

http://www.scotland.gov.uk/Topics/Health/Services/Cancer/TCAT

http://guidance.nice.org.uk/CSGSP/Guidance/pdf/English

http://www.scotland.org/about-scotland/scotlands-geography

http://www.iris.cancerpartnership.org.uk/research


13 - Appendices

Appendix 1 Organisations participating in the Iris Scoping Survey, and a

Map of Scotland showing each participating organisation’s location.

Appendix 2 Prompt questions used for all 3 Focus groups.

Appendix 3 Scoping Survey Questionnaire used for all organisations face-to-face

and telephone interviews.

Appendix 4 Iris’s Curriculum of specialist training

Appendix 5 Table 1 - Key barriers from focus groups

Table 2 - Key barriers from organisations surveyed

Table 3 - Referral routes of organisations surveyed

Table 4 - Advice from organisations surveyed

Table 5 - Profile of Organisations


Appendix 1 – Organisations participating in the Iris Scoping Survey

Aberdeen Hospital, Friends of Anchor.

Ayrshire Cancer Support.

Barra Cancer Support Group.

Blantyre Haven.

Bra Nicht.

Cancer Support Scotland.

Circle of Comfort.

Clan Aberdeen.

Clan Ballater.

Clan Banchory.

Clan Inverurie.

Clan Orkney.

Clan Stonehaven.

Elgin Cancer Support Group.

Friends of the Beatson.

Hebridean Men's Cancer Support Group

Highland Hospice.

Kilbride Hospice.

Lanarkshire Cancer Support Services.

Lewis Cancer Support Group.

Macmillan Dumfries.

Macmillan Argyll and Bute.

Maggies Dundee.

Maggies Highlands.

Maggies Lanarkshire.

Marie Curie Edinburgh.

Marie Curie Glasgow.

North Argyll Carers Association.

Prince and Princess of Wales Hospice.

Raigmore Hospital.

Roxburgh House Aberdeen.

Royal Forth Valley Hospital.

St Andrew’s Hospice.

St Colomba’s Hospice.

Stranraer Cancer Support Centre.

Tayside Cancer Support Services.

The Lavender Touch.

Thurso Cancer Support Centre.

Western General Hospital.

Wester Haven.


Map of Scotland showing each participating organisation’s location.


Appendix 2 – Prompt Questions used for all 3 Focus groups.

1 – Introduction

Explain who you are, about Iris and why we are doing this work

Assurance on confidentiality (this will only be seen by Research Team – all reporting /

research findings will be anonymised)

Ask everyone to respect privacy of what others say

Thanks for agreeing to take part, assurance that the exercise is vital to getting the best

service we can to the people who need it.

2 - What is your experience of massage?

Have you ever had one

3 - Have you had a massage since diagnosis?

How was it?

What was good and bad about it?

Where was it given?

By whom?

4 - If you could easily get a massage, would you want it?

Where?

When?

How often?

5 - How would you like people to access massage services?

6 - Would you be willing to pay for it?

Do you think it should be paid for?

7 - What do you think may be possible barriers, that might get in the way of a person with cancer

being able to access massage?

8 - Is there anything else you would like to discuss about Iris, or about massage and cancer?


Appendix 3 – Scoping Survey Questionaire

Date:

1. Introduction

- Explain who you are, about Iris and why we are doing this work

- Assurance on confidentiality (this survey will only be seen by op manager and Research

Advisor – all reporting/ research findings will be anonymised)

- Thanks for agreeing to take part, assurance that the exercise is vital to getting the best service

we can to the people who need it.

2. Interviewee details

NAME

ORGANISATION

POSITION

3. Service information

- Type of service

- Location

- Geographical Area covered by service

- Does any other organisation provide a similar service in this area?

- If so, who and what service?

How does your service fit within Cancer Service provision in this area?

4. Nature of service

- What service do clients get?

- Details – e.g. what kind of massage, any other complementary services

- What are the opening times/hours?

- Is the service available in the evening and or at weekends?

- Where is the service provided?

- How is this determined?

5. Scale

- Duration of a session

- No. of clients per session

- No. of session per clients

- How is this determined


- No. of sessions per week/month/year

(Collect any/all available)

6. Service Operation

- Who can access the service?

- How is the service accessed?

Self-referral? – details

Professional referral? – details

Other? – details

7. How do you staff the service?

8. Reminder that this will be kept confidential

What are the costs of running this service?

(As much detail as possible)

9. How is the service paid for/funded

10. Are clients asked to contribute to the cost?

11. Are clients able to give a donation, if they want to?

12. How long has the service been running?

13. How has it grown and developed?

14. Is the service monitored and evaluated?

If so, please provide details.


15. Please tell me about any links you have with other organisations both local and national.

16. How secure is the future of the service?

17. What are your plans for the future?

18. Are there any obstacles to proving/expanding the service in your area?

(Note all unprompted comments)

e.g. costs; geographical area; inhibited clients

19. What advice would you give to a new service starting up in Scotland?

20. Would you do anything differently if you were starting again?

21. Is there anyone else you think I should talk to?

22. Can you think of any organisation that would be particularly suited to working in partnership

with Iris?


Appendix 4 – Iris’s Curriculum of specialist training


Appendix 5

Table 1 - Key Barriers from focus groups

Focus GroupCost

Clinicians Awareness

Clients Didn't Know

Safe Massage

Possible

Finding Trained

TherapistsGeography

Spa/Health Centre

Turning Away

Focus Group 11

11

11

Focus Group 21

11

11

Focus Group 31

11

11

TOTALS2

33

23

2


Table 2 - Key barriers from organisations surveyed

Geographic

Barriers

Poor

Communication

Funding

Issues

Cultural

Issues

Setting

Up

Recruiting

Volunteers

Expanding

The Service

1

2

3 1 1

4 1

5 1 1

6

7

8 1

9

10 1 1 1 1 1

11

12

13 1

14 1 1 1 1 1

15

16 1 1

17 1

18 1 1

19

20

21

22 1

23 1

24

25 1

26 1 1

27 1 1 1

28

29

30 1 1

31 1 1

32 1 1 1

33

34

35

36

37

38

39

40

Total 4 7 3 6 5 5 3 1 3

Clinicans Not

Aware

Identify

Qualified

Therapists

Org

No:


Table 3 - Referral routes of organisations surveyed

GP's Consultants

Nursing

Staff

MacMillan

Nurses

Maggies

Centres

Social

Workers Patients

Hospices/

Hospitals Comments*

1 1 1 1 1 1

2 1 1 1

3 1 1 1

4 1 1 1 1

5 1 1 1 1 1

6 1 1 1

7 1 1 1 1 1

8 1 1 1 1

9 1 1

10 1 1 1

11 1 1 1 1

12 1 1 1 1

13 1 1 1 1 1

14 1 1 1 1

15 1 1 1 1

16 1 1 1 1 1

17 1

18 1

19 1 1 1

20 1

21 1 1 1

22 1 1 1 1

23 1 1 1 1

24 1

25 1 1 1

26 1 1 1

27 1 1 1

28 1 1 1 1 1

29

30 1 1

31 1 1 1 1 1 1

32 1 1 1

33 1 1

34 1 1 1

35 1 1 1 1

36 1 1 1

37 1 1 1

38 1 1 1

39 1 1 1

40 1 1 1 1

Total 16 14 27 20 2 6 31 8 7

Org

No:


Table 4 - Advice from organisations surveyed

BARRIERS ADVICE TO A NEW SERVICE

1 Doesn't know enough to advise.

2 No soundproofing in therapy room.

Create understanding. Get professionals on board. Make strong local

networks.

3 Funding takes time. Raised expectations from hospital presence. Research well. Adjust expectations. Keep patients informed.

4 NHS protocol slow. Raise awareness. Visit GP's to educate. Be ready to adjust - slow down.

5 Not enough worker resources to develop and expand more.

Do the preparatory homework. Network. Identify key partners. Start

slowly.

6 Volunteers take time to train, support and retain. Get paid staff. Manage volunteer expectations well.

7

Start slowly. Work as a team. Appoint therapist co-ordinator. Have

reflective practice and clinical supervision.

8 Recruiting volunteers.

9

Have guidelines. Limit the service to packages. Be flexible. Have an exit

strategy for clients.

10

Anxious ex-patients, re. new therapists, experience and

qualifications. The cost when money is tight due to long-term

il lness. Seen as a luxury. No know how to access. Being refused by

spa's and salons. Geography. Reluctance to ask a stranger into

home.

Start small. Focus on strength. Build small core team of therapists. Don’t

over-stretch.

11

Start gradually. Win over confidence. Raise awareness with medical team.

Keep accurate records.

12 Was lack of booking system. Lack of therapist's supervision. Grow slowly. Inform all relevant parties. Structure well.

13

Be careful when choosing steering committee members. Have a

package. Keep accurate records.

14 Consultant's trust.

Educate all staff. Build relationships. Bring in outside specialists l ike Iris.

Have free demonstrations for staff.

15 Promotion was not good. Manage the bookings better. A limited package with review and re-referral options.

16

Funding always a challenge. Getting enough volunteers for

fundraising.

Timing very important. Team building and ongoing support and

supervision. Combat geographic isolation by team building.

17

Merged with large organisation. Got future but lost identity. Can't

independently fundraise.

Have a system from established long-term members to move on from a

different sort of service.

18 No trained therapist. Have to pay therapist to travel.

Start slowly. Win confidence of practitioners. Work on behalf of the group.

Be flexible.

19 Get NHS and medical staff support. Can take a long time.

20 Keep positive. Start small. Build networks.

21 Have clear policy re. waiting l ist numbers. Start small and grow. Renew and refresh therapy team.

22 Consultants slow to accept. So many potential avenues to help focus well.

23 One therapy room only. Slow GP links. Start slowly. Communicate with service users.

24

Get people together. Regularly meet to encourage and build interest. Have

key note speakers.

25 Don't allow block-booking. Client nominal charge good idea.

26 Poor communication. Develop links. Learn how to approach GP surgeries.

27

Poor communication. Geographic barriers. Organisations don't

seem to communicate with each other. Communicate with everyone involved. Be open and honest and linked-in.

28

Perception of hospice is place to die. Poor experience with

volunteers in the past.

Survey the demand and respond with times and settings to offer CT. Be

adaptive.

29

30 Finding qualified therapists. Rural setting. Geographic issues.

31

Geography of the islands. Lack of local trained therapists. Getting

clients to use the service. Be realistic. Plan well.

32

Clinicians suspicion. They don't understand the word

'complementary'. They think it means 'alternative' and they worry

clients may steer away from treatment.

Be prepared to make mistakes and learn. Gaining trust and acceptance

takes a long time.

33 Start slowly.

34 Start slowly. Make sure that you meet everyone who is going to be involved.

35

Move forward slowly. Speak to everyone involved before setting up the

service. Keep accurate records.

36 Start slowly. Gain trust. Network well.




40

Org

No:


Table 5 – Profile of Organisations

Age of

Project Massage Reflex Aroma IHM Shiatsu Reiki Yearly

Monthl

y Full Time P/T - 3 P/T - 2 P/T - 1

1 2 1 1 1 1 1 1 1

2 2 1 1 1 1 5

3 16 1 1 1 1 5

4 5 1 1 1 1

5 15 1 1 1 1 1 1 5

6 11 1 1 1 1 1 5 1

7 13 1 1 5 1

8 20 1 1 1 1 5

9 15 1 1 1 1 1 5

10 6 1 1 1 1 5 1

11 7 1 1 1 1

12 11 1 1 1 1 5 1

13 3 1 1 1 1

14 2 1 1

15 7 1 1 1 1 5 1

16 10 1 1 1 1 1 5 1

17 24 1 1 1 1 1 1

18 1 1 1 1 1

19 3.5 1 1 1 1 1 1

20 15 1 1 1 1 1

21 13 1 1 1 5 1

22 3 1 1 1 1 1

23 5 1 1 1 1 1 1 5

24 5 1 1 1

25 5 1 1 1 1 1 1

26 4 1 1

27 3.5 1 1

28 20 1 1 1 1 5

29

30 0.5 1 1 1

31 2 1 1 1

32 6 1 1 1

33 0.5 1 1

34 2 1 1

35 1.5 1 1

36 6 1 1 1 1

37 5 1 1 1

38 1 1 1

39 9 1 1 1

40 16 1 1 5

296.5 39 26 24 11 8 13 1 4 75 7 3 8 12

Org

No:

Weekend

/Evenings

1=YES

Range of Services Daytime - Amount of Service


Opening

Times

Max

Session /

Therapist 0 - 3 4 - 6 7 - 8

No

Limits 1 2 - 3 4 - 8 9 - 12 13 - 17 1 - 3 4 - 6 7 - 11

Clients

Pay

1 1

09:00 - 17:00 5/day 1

09:00 - 17:00 5/day 1 1

As and when 1 1

09:00 - 16:30 6/day 1 1

1 09:30 - 17:00 1 1 1

1 10:00 - 17:00 1 1

10:00 - 15:00 1 1

09:30 - 17:00 1 1.75

1 09:00 - 22:00 7 1 1

1 1

1 1 1

10:00 - 15:00 3 1 1 1

1 1

1 1 1

1 As and when 1 1

1 1 1

Monthly 1

1 1

1

1 09:30 - 17:00 1 1

09:30 - 16:30 1 1

09:30 - 16:30 3 1 1

1 1

1

3 1 1

2-8 1 1

09:00 - 20:00 5 1 1

4 1

1 1

10:00 - 15:00 4-5 1 1

3 1

3 1

1 1

1 7-8 1 1

5 1 1

5 1 1

5 1 1

6 1 1

12 1 14 1 12 17 5 7 0 3 4 3 2 2

Weekend

/Evenings

1=YES

Paid Therapists

Volunteer

Therapists

No. of Sessions Client

Can Have


Clients

Pay Free

Can

Donate Fundraising 50/50 NHS Charity Cost No Cost Future Plans

1 1 1 Start a service in Perth.

1 1 1 New hospice being built.

1 1 £36,000 Develop the Iris l ink. More fundraising.

1 1 1 Pilot project about to start in local hospitals.

1 1 1 Develop additional service in Ayrshire.

1 1 1 Develop services for staff, outpatients and in the community.

1 1 1 Secure even more funding to develop the service.

1 1 1 Recruit more volunteers.

1 1 1 Re-launch the Renfrew library service.

1 1 1 Develop more ward services.

1 1 1 More therapists. More linking in with the day hospice.

1 1 1 New hospice being built. Setting up manual lymph drainage self-care courses.

1 1 1 Befriending service and home visits.

1 1 1 Request to Iris to educate staff, particularly clinicians.

1 1 1 Incorporate more with mainstream services.

1 1 £35,000 Possibly develop non-cancer services.

1 1 1 1

1 1 1 Paliative care support and the buddying system.

1 1 1 Recruit volunteers and request to Iris for volunteers.

1 1 £600 Better premises. Attract more younger members.

1 1 1

To review & manage appointment system differently. To link in with Iris to get

volunteers to the project.

1 1 1 To follow up service for radiotherapy and brachiotherapy clients.

1 1 1 To review its service.

1 1 1

Roadshow and a resource centre for people with a l ife-threatening il lness.

Helping other islands.

1 1 1 Would like to increase the amount of therapies available.

1 1 1 Would like to run drop-in's in Invergordon, Dingwall, Ullapool, Achitibuie.

1 1 1 Would like to have one therapist every day, for every day of the month.

1 1 1 Recruit volunteer therapists with Iris.

1 1 Developing the Bute service ready for the 2014 launch.

1 1 1 Would like to see a therapy service for Mull, Iona, Tiree, Coll and Colonsay.

1 1 1 Upgrade the Newton Stewart cancer support premises. Expand the service.

1 1 1 Would like to see the service developed.

1 1 1

Happy to just run taster sessions as so many places in NHS Lanarkshire offer

therapies.

1 1 1 Keep Iris l ink & develop services. Recruit another volunteer.

1 1 1 Target more working people to attend.




1 1 1

2 38 39 11 11 1 8 £71,601 3

Cost of Service


Ways organisations would like to develop their service What Would You Do Differently

Start a service in Perth.

New hospice being built. Soundproof therapy rooms.

Develop the Iris l ink. More fundraising. Train staff before introducing service.

Pilot project about to start in local hospitals.

Develop additional service in Ayrshire. Manage expectations and frustrations.

Develop services for staff, outpatients and in the community. Don't use volunteers.

Secure even more funding to develop the service. Appoint therapist co-ordinator at the beginning.

Recruit more volunteers.

Re-launch the Renfrew library service.

Develop more ward services. Contracted therapists from the beginning.

More therapists. More linking in with the day hospice.

New hospice being built. Setting up manual lymph drainage self-care courses. Have co-ordinator. Have bookings.

Befriending service and home visits.

Request to Iris to educate staff, particularly clinicians.

Incorporate more with mainstream services. Manage the bookings and promote the service better.

Possibly develop non-cancer services.

Paliative care support and the buddying system.

Recruit volunteers and request to Iris for volunteers.

Better premises. Attract more younger members.To review & manage appointment system differently. To link in with Iris to get

volunteers to the project.

To follow up service for radiotherapy and brachiotherapy clients.

To review its service.Roadshow and a resource centre for people with a l ife-threatening il lness.

Helping other islands.

Would like to increase the amount of therapies available. Don't allow block booking ahead.

Would like to run drop-in's in Invergordon, Dingwall, Ullapool, Achitibuie.

Would like to have one therapist every day, for every day of the month.

Recruit volunteer therapists with Iris.

How to overcome the barrier of being perceived of

being a place to die.

Developing the Bute service ready for the 2014 launch. Finding suitably trained therapists.

Would like to see a therapy service for Mull, Iona, Tiree, Coll and Colonsay.

Upgrade the Newton Stewart cancer support premises. Expand the service. More patients from the beginning.

Would like to see the service developed.Happy to just run taster sessions as so many places in NHS Lanarkshire offer

therapies.

Keep Iris l ink & develop services. Recruit another volunteer.

Target more working people to attend.




Iris Cancer · PDF file · 2014-02-10Maggi Scott, Lorna Forrester, Joyce Gillespie,...

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Transcript of Iris Cancer · PDF file · 2014-02-10Maggi Scott, Lorna Forrester, Joyce Gillespie,...