Macmillan Beyond Diagnosis Service

ANNUAL REPORT 2017

2

Contents

Foreword 3

Introduction 4

Meet the team 4

Headline achievements in 2017 5

Our volunteers 6

Volunteer feedback 6

Service performance - the detail 7

Service user feedback 12

Our objectives 16

What’s new in 2017? 16

Community outreach 18

Plans for 2018 19

3

Foreword

We have great pleasure in presenting this 2017-2018 report for the Macmillan Beyond Diagnosis Service provided by Self Help UK.

The report shows this is a flourishing service - with a growing number of referrals supported by a corresponding increase in volunteers collaborating with us to make this possible. Levels of satisfaction remain very high among both service users and volunteers, highlighting this as a responsive, compassionate and practical resource for people affected by cancer.

When we started this service in 2014, we had a vision that the support offered to people affected by cancer would empower them to have more influence over their own health and wellbeing and inspire people to come together to share experiences and create new self help groups.

We are very pleased to report that this is now a reality, and this year we have seen the successful initiation of new self help groups, demonstrating that the service can generate ongoing and sustainable support.

With significant numbers of volunteers continuing to come forward and completing our training, we are confident that the service can continue to expand and increase the level of support it offers, as well as providing new and rewarding opportunities for volunteers.

As we move into 2018, we are also delighted to announce that Macmillan Cancer Support will be continuing to fund this project for another two years, to March 2020. We will be working to extend the reach of the service across the whole of Nottinghamshire. Therefore this year, we will be launching the service in Broxtowe, Rushcliffe and Gedling and we look forward to recruiting new volunteers in these areas to benefit even more people affected by cancer.

Another exciting development sees a new post created in the Macmillan Beyond Diagnosis Team to work specifically with the Deaf, Deafened and Hard of Hearing Community in Nottinghamshire and Derbyshire. This will help to identify the tailored support this community want and need when affected by cancer. We look forward to co-producing a range of new and innovative support options over the next two years thanks to additional funding for this project.

We would like to extend our thanks to Macmillan Cancer Support for the trust and support they have shown us from the beginning and for their commitment to ensuring that more people affected by cancer can benefit from our work. We are also grateful to the clinical staff across the city and county who continue to refer people into our service and promote its value to colleagues, patients and carers.

However, none of this work would be possible without the energy and dedication of our amazing volunteers. They bring a wealth of experience, skill and knowledge to their role – providing the very best support to people when they need it the most.

Over the coming year, we will see new areas of Nottinghamshire and Derbyshire benefitting from our service, more self help groups taking root and additional volunteering and support opportunities emerging. We are incredibly encouraged by the impact so far and excited to see what more we can achieve together.

Many thanks and best wishes,

Sarah Collis, Chief Executive Dr Suzanna van Schaick, Trustee

4

Self Help UK is currently funded by Macmillan to provide a project which offers a variety of self-care and supported self-management opportunities for people living in Nottingham City, Mansfield, Ashfield and Newark and Sherwood.

In June 2015, the Macmillan Beyond Diagnosis Service was launched to provide practical and emotional support for people affected by cancer. To enable the support, Self Help UK identifies, recruits and trains volunteers who provide support in a variety of both traditional and innovative ways as outlined within this report.

Nationally, there has been variable success with volunteer based cancer support services, however our model has successfully grown since its launch and has significantly exceeded comparable national averages. What makes this project unique is its links to widening peer support through access to ongoing peer support groups and networks beyond the more traditional volunteer support model.

The support and training we provide our volunteers is central to our broader offer and enables the service to recruit a large number of highly capable volunteers, and more importantly, keep the volunteers engaged with the service. In recognition of our robust training and support processes, Macmillan awarded the service the Gold Standard Award for volunteer management. Within the annual report, we will highlight the growing success and impact of the service, and outline particular areas of development and innovation.

During 2017, we had a team of three full time professionals working within the service within different geographical areas. The team comprised:

Josh Wood Volunteer Support Worker37.5 hours per week, Newark and Sherwood.

James Wheat Service Manager 37.5 hours per week.

Kerry Brealey Volunteer Support Worker37.5 hours per week, Mansfield, Ashfield, Nottingham City.

Introduction

Meet the team

5

of service users felt less likely to visit their GP after accessing support from the service.

Headline achievements in 2017

were made to the service in 2017 a 27% increase from 2016.

were recruited in 2017, increasing our overall total number of trained volunteers to 210.

of volunteering was provided in 2017 to support local people in Nottinghamshire affected by cancer.

of service users in 2017 felt more supported during their cancer journey after accessing the service.

295 referrals 86 volunteers

4038 hours

which can typically include help with shopping and gardening.

were signposted to other services by volunteers, such as information services, walking groups and self-help groups.

of service users in 2017 rated the service as good or excellent in their individual evaluation.

which can typically include activity such as befriending, accompanying a hospital visit or going for a cuppa and a chat.

There were

1994 instances of emotional support,

There were

364 instances of practical support,

231 service users 96%

87% 44%

6

Overview – Volunteering for Macmillan Beyond Diagnosis

86 new volunteers joined the service in 2017. In total, the service has recruited and trained 210 volunteers to support local people affected by cancer. Volunteers from the service also set up two new support groups: the Newark Cancer Support Group and the Ashfield Cancer Support Group. Over the year, up to 91 volunteers were actively volunteering for Beyond Diagnosis.

Our volunteers are required to complete an application form, attend an interview and training prior to joining the service. In 2017 we held seven training sessions for our 86 new volunteers.

The training ensures volunteers have a broad understanding of the challenges the role presents, particularly in terms of safety and emotional resilience. In order to ensure the training is appropriate, we have worked with various partners to develop and refine our training package. In addition, we gather attendee feedback - this rated the training as 9.1 out of 10 in 2017.

Volunteers are encouraged to attend continuing professional development days in the form of monthly coffee mornings. During the reporting period, seven coffee mornings were held with an average attendance of 16 volunteers per coffee morning. The CPD sessions are moved around the county to ensure they are accessible to volunteers living in different parts of Nottinghamshire.

Volunteers are encouraged to offer suggestions and comments regarding service improvements, both informally at coffee mornings, and more formally through specific surveys. Last year, all new volunteers successfully completed the recruitment process by completing a DBS check and providing two satisfactory references.

In addition, current volunteers contribute to our training offer by talking about their experience of volunteering, and what they get out of it, to prospective volunteers. A popular monthly volunteer-produced newsletter was also relaunched in 2017. Such is the outstanding contribution of the service’s volunteers, the team saw fit to nominate three people for Macmillan’s Volunteer Awards.

Our volunteersWhat do our volunteers think?

“I think of the people I support constantly. I get an enormous amount from volunteering, it’s lovely to give something back.” Lisa, Newark

“It’s a fantastic voluntary service to be part of, with a huge range of training and new friends to make along the way.” Clare, Mansfield Woodhouse

“What do I get out of it? Most of all enjoyment and fulfilment of being able to help others, understanding from my own experience what they are going through and just being there for them.” Paul, Newark

7

Service performance

What do our referrers think?

Referrals

‘The passion from James, Kerry, Josh and their team of volunteers is apparent. We regularly get to see the transformation in service users’ lives: you can see the spark returning, confidence increasing, and them becoming more sociable and engaged. The Macmillan Beyond Diagnosis Service is the ‘icing on the cake’ after treatment is over, providing emotional and an element of practical support in an entirely patient led, non-judgemental, empathic and flexible way.’

Jo Gregg, Macmillan Information Officer, Sherwood Forest Hospitals

‘Macmillan Beyond Diagnosis has been pivotal to enabling the Macmillan One2One Project and the Macmillan Virtual One2One Project to become established and remain sustained.

The Macmillan One2One Support Project has been established since October 2015, during that time many have hugely benefited from this bespoke service for young people that Macmillan Beyond Diagnosis provides, receiving tailored emotional and practical support in the patients home, in addition the Virtual One2One Support service has supported young people emotionally from across the East Midlands. One young person’s feedback included: “My weekly visit is the only time I get out of the house.’

Laura Cutler, Macmillan Clinical Nurse Specialist for Long Term Survivors of Teenage and Young Adult Cancer, Nottingham City Hospital.

‘Macmillan Beyond Diagnosis has been a great source of support for those patients that visit the Macmillan Information and Support Centre at QMC.

This is a service that we repeatedly refer or signpost patients to and the feedback received to date has been inspiring: many are truly grateful for the support offered in what is for them, and their loved ones, a traumatic and upsetting time.

Without question, Macmillan Beyond Diagnosis is a fantastic service that Nottinghamshire is very fortunate to have and one that, if utilised to its fullest, will have tremendous and far reaching benefits for all those that use it.’

Rebecca Lea, Macmillan Information Officer, Queens Medical Centre

8

Number of service user referrals

We have seen further growth in our service, culminating in an increased number of referrals. In 2017 we received 295 referrals to the service, a 27% increase from 2016. (Fig. 1)

Figure 1 - Number of referrals to the Macmillan Beyond Diagnosis Service

350

300

250

200

150

100

50

02015

76

2016

232

2017

295

Figure 2 - Number of referrals per month

40

35

30

25

20

15

10

5

0

17

29 30

21

24

34

22 22

36

25

22

14

Jan-

17

Feb-

17

Mar

-17

Apr-1

7

May

-17

Jun-

17

Jul-1

7

Aug-

17

Sep-

17

Oct-1

7

Nov-1

7

Dec-1

7

Service user referrals per month

9

Figure 3 - Location of referrals

140

120

100

80

60

40

20

0Nottingham Mansfield Ashfield OtherNewark and

Sherwood

124

6154

45

11

Location of referrals

We recognise that a higher proportion of our service users referred in 2017 live in Nottingham (42%), followed by Mansfield (21%), Newark and Sherwood (18%) and Ashfield (15%) respectively. (Fig. 3)

Which services are referring to our service?

The service was initially positioned to attract referrals from health professionals who were actively supporting local people affected by cancer. It is unsurprising therefore that approximately 74% of referrals come from health professionals. (See Figure 4).Using this data we can also identify which health professionals are engaging with the service and referring patients. Details can be viewed below in Figure 5:

Figure 4 - Referral routes

250

219

45

8 6 6 5 2 1 1 1 1

200

150

100

50

0

Clin

ical

Self

care

hu

bAd

ult s

ocia

l ca

reBo

ots D

VSSe

lf re

ferr

alCa

re co

ordi

nato

r

Age U

KPo

lice

Serv

ice

Fam

ilyJa

ne B

eech

Trus

tRh

ubar

b Fa

rm

We recognise that a variety of health professionals refer into the service from a wide range of disciplines; this has been partly achieved by our service development plans, which encouraged continued shared working in these areas.

10

Figure 5 - Clinical referral routes

22

3333

444

55

614

2222

2540

52

0 10 20 30 40 50 60

RadiographyPhysiotherapist

SCOPEMental health nurse

Macmillan GPDistrict nurse

Discharge coordinatorGP

HaematologyOT

Clinical psychologistOncology

TYA ServicePalliative care

HospiceCNS

Macmillan info centreCommunity Macmillan Nurse

VolunteersNumber of new volunteers

A key part of our service delivery is the recruitment and retention of volunteers to the service. Our plans ensure that we do not over-recruit new volunteers and instead base our recruitment plans on the number of new service user referrals and the retention of existing volunteers. We are pleased that the number of new and retained volunteers met our expectations in 2017. Detail can be viewed below in Figure 6;

Figure 6 - Number of new and existing volunteers

250

200

150

100

50

0Jan-Mar

New volunteers Total number of trained volunteers

Apr-Jun Jul-Sep Oct-Dec

169180

192

210

11 12 18

45

11

Figure 8 - Number of service user visits by a volunteer

Volunteering interactions have increased by 21% from 2016, with a slight decrease in December reflecting the service closure over the holiday period. (See Figure 8 below).

Jan-

17

Feb-

17

Mar

-17

Apr-1

7

May

-17

Jun-

17

Jul-1

7

Aug-

17

Sep-

17

Oct-17

Nov-17

Dec-17

250

200

150

100

50

0

For the purposes of this report, a volunteer interaction can be defined as a visit to provide practical or emotional support to a service user. We have seen an increase in the number of volunteer interactions from 1738 in 2016 to 2019 in 2017. This demonstrates that our service has continued to grow and we envisage a further increase in 2018.

Figure 7 - Number of volunteer interactions

2017

Jan-Mar 557Apr-Jun 504Jul-Sep 559Oct-Dec 399Total 2019 (Total in 2016 = 1738)

12

We invite our service users to provide feedback of their experience with our service. This feedback is used by the Macmillan Beyond Diagnosis Service to continually assess and improve our service, to ensure we are meeting the expectations of local people affected by cancer.

Here are some short comments taken from our service evaluation forms:

Service user feedback

My volunteer has improved my confidence and put a smile back on my face.

I have been given a chance to talk things through without being judged or feeling guilty. The feeling of being really listened to is so very supportive.

With my volunteer’s help I’ve been able to visit the shops every week. Little things like that make such a difference.

It’s been a tough year and I’m glad my volunteer has been there throughout it.

Since my husband died I became more and more isolated. I thank my volunteer for giving me the encouragement to meet other people affected by cancer at a support group.

As a man I’ve never really spoken about my feelings. My volunteer has listened and taught me it’s OK to talk. I’m forever grateful for his support.

“I wouldn’t have been strong enough to get through this without [the volunteer] support. You don’t feel so alone. I would have been in a worse mental state without the service.

Someone unconnected, who’s not a friend or family member, has been really helpful.

13

As highlighted in Figure 9, and exemplified by comments above, 80% of service users rate our service as Excellent with 96% of service users rating the service as Good or Excellent. During 2017 we did not receive a rating below Average (4%). We received 150 evaluations in 2017 and it can be noted that not all service users respond to our evaluation requests.

87% of service users felt more supported with their cancer journey since accessing the Macmillan Beyond Diagnosis Service. Responses from 150 evaluations received in 2017 can be viewed in Figure 10.

Figure 9 - Service user rating

140

120

100

80

60

40

20

0AveragePoorVery poor Good Excellent

120

24

600

Service user evaluation - How would you rate the support you have received by the service?

Figure 10 - Service user evaluation - Do you feel more supported?

Service user evaluation - How would you rate the support you have received by the service?

140

120

100

80

60

40

20

0No Unsure Yes

1

18

131

14

44% of service users stated they felt less likely to visit their GP since accessing this service. We recognise that for many of our service users, our support service will have no impact on the frequency of their visits to their GP. However, we also recognise that reducing social isolation and loneliness may contribute to a reduction in accessing healthcare services. Please refer to Figure 11 for further details.

Figure 11 - Service user evaluation - Did the service reduce the number of visits to your GP?

70

60

50

40

30

20

10

0No Unsure Yes

54

30

66

Service user evaluation - What do we do well?

We collated our service user comments to analyse what we do well as a service. From our evaluation we discovered that four key themes emerged:

Service user evaluation - Frequency of GP visits

1) Fast response by the service

2) Kind volunteer

3) Good communication

4) Well matched with a volunteer

15

Figure 12 - Service user evaluation - What do we do well?

Fast response

Kind Volunteer

Good Communication

Well matched

Clear Explanation

Caring Service

Understanding of Other Services

Easy to Access

Flexible

33

31

30

29

24

16

14

5

1

Service user evaluation - What do we do well?

Number of responses

Service user feedback - What can we do better?

The service received 21 suggestions of what it could do better within the evaluations. The most frequent responses were:

1) Provide volunteer drivers

2) Offer more varied activities

3) Offer more flexibility

The evaluation data is discussed within regular team meetings to constantly review and improve the Macmillan Beyond Diagnosis Service.

16

Our objectives

There are several key objectives for the service, which include:

A trained volunteer works with a service user in an asset-based approach; that is, by listening to the experiences and interests of the service user to design the type of support taking place. Key outcomes for a service user may include enabling them to:

What’s new in 2017?

Developing Self Help Groups

In line with the aims of the project, the Macmillan Beyond Diagnosis Service has worked to increase access to Self Help Groups across Nottinghamshire by building strong relationships with existing cancer self help groups. This has led to increased signposting of our service users to groups, and using the team’s skills to develop new groups where a gap has been identified.

The launch of the Newark Cancer Support Group

Launched in July 2017, The Newark Cancer Support Group is the only group of its type in Newark: providing a safe and comfortable space for people living with and beyond cancer as well as allowing friends and family of those with a diagnosis to communicate with one another. The group is led by a Macmillan Beyond Diagnosis volunteer, who felt she could have benefited from a local support group during her own cancer journey. The group has recently secured start-up funding and is planning to increase promotion and participation this year and to invite varied speakers next year.

• Increase the local provision of support for someone affected by cancer

• Improve outcomes for people affected by cancer

• Increase cancer awareness in the local community

• Increase access to cancer self help groups

• Increase the number of cancer self help groups to provide sustainable support for people affected by cancer

• Raise awareness of the value of self-care and supported self-management

• Ensure volunteers are offered a robust training and supervision package, alongside ongoing training and support

• Be committed to professional development and volunteer training

• Ensure Macmillan Quality Standards are met

• Make informed decisions and choices

• Support themselves with self-care and self-management

• Develop a personal strategy

• Improve health and wellbeing (measured through the personalised plans)

• Reduce stress

• Integrate into community resources

• Access services

• Explore options

• Manage their health

• Reduce their isolation or prevention of isolation

• Support and be supported by others in a similar situation

• Find creative solutions to help themselves

• Take control of their journey and treatment

17

New developments on the Macmillan Beyond Diagnosis ServiceLaunch of the volunteer steering group

In 2017, we launched our volunteer-led steering group with seven volunteer members. The group’s membership is made up of volunteers actively supporting people affected by cancer, with the purpose of supporting the strategic development of the service. We are very keen for the steering group to continue to be a significant part of our development, giving a formal platform to our volunteers to help shape and improve our service.

Growth of the One2One Support Service

We have worked closely with partner organisations to develop the One2One support service, which provides support for people aged under 30 affected by cancer. Whilst researching the development of the service, we have worked closely with teenage and young adult specialist cancer services to ensure appropriateness of the offer resulting in a bespoke practical and emotional support service which has received 14 referrals in 2017.

Growth of the Virtual One2One Support Service

We have developed the Virtual One2One service to ensure a broader support offer for people living in rural communities who may be socially isolated or lonely. Working closely with partner organisations, our project coordinates the Nottinghamshire element of the service, enabling volunteers to support people affected by cancer via telephone, Skype, text message and phone applications, thus ensuring that no one has to face cancer alone irrespective of their geographical location.

Service Expansion – Newark and Sherwood

We have witnessed significant growth in the number of referrals and new volunteers in the Newark and Sherwood area, predominantly due to the continued efforts of our dedicated development worker here.

Service expansion – Mansfield, Ashfield and Nottingham City

Similarly, in Mansfield and Ashfield we have seen a surge in referrals and volunteer recruitment, as a result of the outreach work carried out by our development worker.

The launch of the ABC Cancer Support Group

A group of people affected by cancer in Ashfield, identified that they needed a space to discuss how they were feeling, to help their situation through peer support and find out more information about living well with and beyond cancer. The ABC group launched a pilot in September 2017 with the help and support of Self Help UK and Macmillan. 8-14 people have regularly attended each month and they are now planning future dates and speakers for the new year.

18

The Macmillan Beyond Diagnosis Service attends community based events primarily to promote the service and volunteer opportunities. Our information stand also includes a variety of self-help and self-management information, including the Directory 2017 of Self Help Groups across Nottinghamshire. In addition, we provide general Macmillan information leaflets to increase cancer awareness in the local community.

In 2017 we have:

• Visited six cancer support groups

• Attended 14 Health and Wellbeing Events

• Engaged with more than 1000 people at community outreach events

• Supported the Macmillan Bus on two separate occasions

• Attended six jobs fair or employment based events

In addition the service has provided information stands at various community or general public settings:

• Held information stands at six supermarkets

• Held information stands at five general marketplaces

• Held information stands at five leisure centres

We also celebrated our very first volunteer-led fundraising event, entitled Macmillan’s Got Talent, which raised £306 to be invested back into the service. Designed to bring people together through a light hearted and entertaining evening, attendance was free of charge for all of our service users and volunteers.

Community outreach

Press and Radio

The Macmillan Beyond Diagnosis Service has featured on Mansfield local radio and featured on Radio Newark in our first ever joint volunteer and service users’ radio appearance. Our article celebrating our two year anniversary, and the story of one of our service users, was disseminated widely around the county.

19

FundingThe Macmillan Beyond Diagnosis Service is joint funded between Macmillan and Nottingham City CCG. In May 2017 we reapplied for James Wheat, Service Manager’s, post but were unsuccessful and subsequently lost this funding. SHUK funded James’ post from May 17 through their reserves. Moving forward, it is essential to find a sustainable way to fund what has been a hugely successful service.

James’ departure

The end of 2017 coincided with our service manager, James leaving the role for a position at Nottinghamshire County Council. We would like to thank him for his unerring enthusiasm and commitment to turning what was a pilot project into a fully-fledged peer-to-peer cancer support service which has supported more than 600 people affected by cancer. With input from Macmillan, we are looking forward to recruiting a third member of the team in April 2018 to enable us to develop the service in new areas of the county.

Plans for 2018Volunteer and Referrals

We are expanding our volunteer cohort in 2018, to ensure we have greater capacity to support local people affected by cancer. We envisage the number of referrals will continue to increase, with continued high levels of engagement from health care professionals in Nottinghamshire.

Steering Group

We anticipate our volunteer-led steering group will support the continued development of our service, ultimately enabling us to provide a high quality service to people affected by cancer. We will use the steering group to further develop our offer to new and existing volunteers, ensuring our volunteers are well trained and supported to carry out the role.

Deaf Cancer Support Group

We are also excited to explore the possibility of a new deaf cancer support group. From our research, this may be the first deaf cancer support group in the country. Meetings will be held every few months to talk about how best to launch the group.

Summary

2017 been an incredible year in terms of service performance. We have witnessed a significant increase within professional engagement culminating in a large proportion of referrals coming via professionals. We have also demonstrated high levels of engagement with volunteers, recruiting a high volume of capable volunteers whilst ensuring that we are able to retain existing volunteers.

The service currently has two full time professionals funded by Macmillan and will recruit a third in the new financial year. This has enabled the service to expand with new innovative methods to support more people affected by cancer, such as the launch of the One2One Support Service and the Virtual Support Service.

The service has continually received excellent feedback from its service users and volunteers and this feedback is a key element of our service and its growing reputation within Nottinghamshire.

20

How to contact the service:

Phone 0115 9111662

Email referrals@selfhelp.org.uk

Post: Macmillan Beyond Diagnosis, 21 – 23 Pelham Road, Nottingham NG5 1AP