GM Cancer User Involvement Newsletter

Welcome!

Welcome to our first Greater Manchester Cancer User Involvement newsletter. As you all are aware, we’re looking at how we can do things better, and in our recent survey, better communication was asked for. You asked, and we said let’s improve.

This newsletter will help us to tackle some of the other issues that came up in the survey. Look out for the “You said, we did” boxes as you read.

We’re using our website to distribute the newsletter, and it’s been designed to be accessible to as many people as possible. That means you can use your browser to change the text settings to make it easy for you to read, or you can use a screen reader. Meeting accessibility standards is a key part of providing an equitable service, and it’s important we do our best to follow the guidelines set out.

Using the website also means that we can share the newsletter, and it will be available for anyone to read. This will hopefully help us to recruit more service users.

As our website is a bit old, and getting out of date, it means we’ve had to make some compromises about how the newsletter looks, which we hope you don’t mind too much. The good news is, our new website is in development and hopefully will be up and running in time for our autumn edition.

We hope you find the update useful and informative, and we’d welcome your feedback and input. Please get in touch with Jane or Sinead if you have anything you’d like to mention.

Improving Service User Involvement

Thank you to everyone who was involved in co-producing the improving service user involvement questionnaire, those who provided their feedback via survey monkey and to those involved in co-producing the recommendations. Look out for the information in speech bubbles through the newsletter, which details how we aim to work together to make improvements for user involvement.

You said: You didn’t feel that the service users involved in the programme represented the views of all people affected by cancer within Greater Manchester and East Cheshire. We did: We have introduced an electronic registration form for the greater manchester cancer user involvement programme which will allow us to adequately capture information such as ethnicity, age, gender etc, so we have a clear picture of the communities that our service users represent. We have secured funding to work with the voluntary organisations, community groups and social enterprise (VCSE) to address the gaps in representation.
Spotlight on Pathway Board Service Users.
Patrick Fahy
Service User Representative on the Psychological Support and Mental Health Pathway Board

Patrick has been a valuable member of the board for many years and constantly contributes to the workplan by bringing a value-driven approach.  Most recently he was a member of the planning sub-group for our first event: ‘Keeping Our Minds in Mind’ which was delivered on 30th June.

Patrick worked closely with Dr Louise Mozo Dutton, the sub-group’s Clinical Lead, helping to plan the agenda and formulate the day to ensure it incorporated the voice of the patient.  Patrick was also a panel member on the day, discussing what we mean by good psychological care. 

Patrick is involved in many groups aimed at improving cancer care within Greater Manchester and always incorporates the wider patient/carer voice he gains from these sources to drive forward improvement.

What others had to say about Patrick:

I would like to recognise the contribution of Patrick to the GM Cancer psychological support & mental health Pathway Board. In particular, his role in the education event that took place in June of this year.  Patrick is a well-respected and valuable peer who we regularly call on for contributions to our work programme.  He ensures we are appropriately addressing the values of co-production and co-delivery within our Board” – Dr Padraig McDonnell

“Patrick’s input was invaluable both throughout the planning phase and on the day itself. On the day, Patrick took part in a panel discussion alongside Leila Hamrang, a fellow service user. Both spoke incredibly articulately about their experiences and what mattered to them providing insight and learning for all.”
– Dr Louise Mozo Dutton

What Patrick had to say:

“I love my work as a service user representative with GM Cancer and with other cancer services within Greater Manchester. It is immensely rewarding as I always feel respected as a spokesperson for so many patients and carers. The professionals involved are amazingly supportive and a constant delight to work with.”Patrick

Jo Taylor, Victoria Yates and Deborah Watts
Service User Representatives on the
Breast Cancer Pathway Board

User Involvement underpins all of the work undertaken by the Breast Pathway Board. Our service user representatives are instrumental to the success of the work programme. Here are just a few of the things that our service users have been working on within the past year…

Patient information for the Genetic Testing Pathway: Co-production of patient information, consent forms and patient and clinician education videos. Victoria’s feedback was invaluable, identifying specific wording that could be distressing to patients with fertility concerns following a diagnosis

Multi Disciplinary Team Reform Project:
Co-production of an infographic to support patient information regarding MDTs which will be shared across other pathways

Patient Impact Statement
Supporting the inclusion of the Patient Impact Statement, ensuring that patient concerns are addressed and that communication is optimised

Reconstructive Surgery
Deborah has been liaising with the Breast Cancer Small Community and other groups to understand what patients feel is important regarding reconstructive surgery for the GM Breast Services Resilience & Sustainability Group.

Bone Metastases Education
Jo has taken part in a video presentation that was shared at the Bone Metastases study day hosted by The Christie School of Oncology

Secondary Breast Cancer Symptoms Infographic
Jo has been taking her infographic on the signs and symptoms of Secondary Breast Cancer far and wide. She was the lead author on our poster which was accepted to GM Cancer Virtual Cancer Week, The Association of Breast Surgeons Annual Conference and the ABC6 conference. This infographic has been accepted into a toolbox of resources and is being translated into multiple languages.


“As well as their direct input into our work programme, our service users bring the thoughts and views of their wider communities with them. Through their charity work and forums they have connections to the voice of patients with Breast Cancer which impacts directly on all of the work we do. I am continuously amazed by their dedication and passion to improve the lives of patients with cancer.”

Claire Goldrick, Breast Cancer Pathway Manager, GM Cancer

Many thanks to Deborah Watts, Victoria Yates and Jo Taylor for their continued support.

You said: you wold benefit from more training in your service user role. We did: We are planning to undertake a skills audit to understand the current gaps in knowledge. A skilss assessment form will be incorporated into the induction of new service users. A virtual induction "offer" will be developed. A training policy will be introduced that ensures service users have the necessary awareness, knowledge and confidence. Scoping of the appetite of service users to introduce a buddy / mentor system.
Cancer Alliance Successes

Rapid Diagnostic Centre Award Nomination

The HSJ Value Awards 2021 celebrates the projects and teams driving operational, financial, and clinical improvements across the health system. Greater Manchester Cancer Alliance, in collaboration with the Northern Care Alliance Group, are finalists in the Cancer Care Initiative category for our Rapid Diagnostic Centre. Fingers crossed for the award ceremony which will take place on 2 September 2021!

Greater Manchester Surgical Hub

The Greater Manchester Surgical Cancer Hub was ‘highly commended’ in June 2021, following its shortlisting for the Health Service Journal Local Covid-19 Response Partnership Award.

The Greater Manchester Surgical Cancer Hub was set up by the Greater Manchester Cancer Alliance in April 2020 in order to help keep vital cancer services running across Greater Manchester and East Cheshire in the midst of the COVID-19 pandemic.

The hub maintained urgent cancer surgery with protected bed and surgical capacity at COVID-19 ‘green sites’ at The Christie and Rochdale Infirmary.

The hub ensured that patients received urgent cancer care in a timely manner, in a COVID-safe way. The hub ensured equity of access for patients across the region, as resources were shared whilst other hospital sites saw a rise in COVID admissions.

The collaboration between Rochdale Infirmary and The Christie has brought together a full complimentary cancer service treating breast, general surgery, gynaecology, plastics and urology cancers.

The service has helped to ease the pressure on other acute hospital sites across Greater Manchester and East Cheshire.

GMCancer Surgical Hub wordcloud: includes the following words: caring, enthusiastic, collaboration, pleasant, efficient, organised, exceptional, lifesaving, speedy, kind, reassurance, safe, attentive, sympathetic, support.
The word cloud above captures some of the feedback from patients being treated through the Hub.
You said: communications need to be improved. We did: As a starting point, we have introduced this quarterly UI newsletter to provide a forum to improve communications. Please do input into this.

Team News

In September, we will be delighted to be welcome back Kathryn Groom from maternity leave.  Kathryn, who was previously the CURE Assistant Project Manager, will be covering Rachel Allen’s Pathway Manager role while Rachel enjoys her maternity leave.

We have recruited 2 new Pathway Clinical Leads. Dr Stephanie Ogden, Clinical Lead for Skin Cancer and Dr Konstantinos Kamposioras, Clinical Lead for Acute Oncology took up their posts at the beginning of July 2021. Thank you to those service users who provided invaluable input into the interview process for these appointments.

You said: you asked for information of the work of service users on pathway boards. We did: we have included a spotlight section in this newsletter.

User Involvement in
Virtual Cancer Week

During the planning and delivery of Virtual Cancer week in May 2021 there were 22 service users registered with the Greater Manchester Cancer User Involvement Programme involved.

User involvement was incorporated from representation on the planning team, making short films, sitting on and chairing panel discussions and co-producing a separate User Involvement Session.

We made 10 films with service users covering a wide range of topics, such as; early diagnosis, prehab, getting emotional care right, engaging communities, what is user involvement, cancer related fatigue and fatigue management, cancer treatment and diagnosis during COVID-19. We also had 10 service users who sat on panel discussions covering a range of topics.

A huge thank you to all of you who took part and really brought the service user perspective into each of the sessions. Here is the evaluation of the session on User Involvement.

Infographic showing user involvement in Virtual Cancer week. For the "What is User Involvement" session, there were 75 total watches, 48 live and 27 on demand. 100% of viewers said they would recommend the session.
You said: the programme was poorly resourced and would benefit from more professionals to aid communication. We did: We have advertised a UI Manager post to expand the team and facilitate improved communications.
Would you be willing to be a mentor / buddy? A number of service users suggested the introduction of a mentor / buddy system to support service users new to the programme. if you would be willing to be involved, please contact Jane or Sinaed.