Living With and Beyond Cancer Programme
NEW! An app is now available for anyone affected by Cancer. Download it for free!
The Cancer Survivorship Team are involved with embedding and improving resources and support services for people affected by cancer throughout their treatment and beyond as part of the Living With and Beyond Cancer Programme. It aims to enable and empower patients by increasing their knowledge about services that are available to them in order to support them to live well with cancer throughout their treatment and beyond.
The Programme consists of four main elements but is also involved with other projects, like the Living With and Beyond Cancer App, to improve services and resources for people affected by cancer.
- Health Needs Assessment and Care Plan
- End of Treatment Summaries
- Living Well Offer: Living Well Sessions and Videos
- Person Centred Follow Up
Why are Living With and Beyond Cancer Services so vital?
There has been a lot of positive feedback about the treatment patients/people living with cancer received whilst at the Trust:
“Cancer treatment and care at SaTH is second to none – with efficiency, kindness, personal service and good communication”
“Treatment at SaTH is world class – the staff are always available for questions and support”
However, it also identified gaps regarding the after care:
“After care is a bit of an afterthought. We feel cast adrift after our treatment without consistent info and support. Who gets what afterwards is a lottery!”
“After care towards the end of treatment is perhaps the least understood part of the cancer services but as my family and I are finding, it is the most vital part and could be so much better”
In response to this, the Living With and Beyond Cancer Programme was formed to introduce the five main interventions mentioned above. These interventions aim to improve the quality of life of anyone living with cancer and their loved ones.
Please click on the tabs below for further information:
Launched by The Shrewsbury and Telford Hospital NHS Trust (SaTH), the “Living With & Beyond Cancer App” is free and has been developed in collaboration with people living with and beyond cancer, local NHS cancer specialists and other organisations who provide services for people affected by cancer.
As well as being a resource for people living with and beyond cancer in Shropshire, Telford & Wrekin and Powys, this information app can also be downloaded for people who are supporting people following a diagnosis as well as other healthcare professionals across the county.
What information does it contain?
- About the hospitals, the treatments you may have and the teams you may meet
- Services that may benefit you
- Living With & Beyond Cancer Programme; empowering people throughout treatment and beyond
- Signposting to other services or organisations that may be able to offer you support
- An Events calendar keeping you up to date on what is happening near you
- Constant up-to-date information from other organisations and services
- What is happening near you in the community?
- Good news articles, keeping you up to date what is happening for people affected by cancer throughout Shropshire, Telford & Wrekin and Powys
- A contact directory where you can contact teams directly through a click of a button
For more information or to suggest content for the app:
Please contact the Survivorship Team on: 01743 492424 or email: firstname.lastname@example.org
Click here for the Download Guide or scan the QR codes below to install the app:
For Android devices:
For iPhones or iPads:
The HNA gives you an opportunity to think about what may be concerning you. It offers you a chance to discuss any concerns or questions with your team. The HNA will be offered to you by your clinical team as part of your pathway. However, if you feel you have concerns that need to be addressed before you have been contacted, you can ring your Cancer Care Co-ordinator, the Macmillan Information and Support Centre or the Survivorship Team who can help with any concerns or questions you may have. It may be that the person you speak with signposts or refers you to a different team depending on what your concerns are. This is so that the questions or concerns you have are answered by the most appropriate person or team.
Concerns you have may include:
- Practical concerns
- Family/relationship concerns
- Emotional concerns
- Spiritual concerns
- Physical concerns
- The need for further information and support
As part of the HNA, the team member will ask whether you would like any agreed actions documenting and sending to you in writing as part of a care plan. These actions may include ones to be completed by yourself or a member of your team dependant on what they are and what you discussed as part of your HNA.
How to Use the Distress Thermometer?
There are many ways of using the Distress Thermometer but, it allows you to express how much your concern is affecting you using a scale. This can then be used as a guidance to support the team member as to what resources or services may be able to help you best.
0-4: Your score indicates that your distress levels are well under control at present. However, there may be some additional sources of help available to you.
5-7: Your score indicates that you are experiencing some distress that may be affecting your life quite significantly. It could be worth discussing this with your health care team and finding ways to get some additional support.
8-10: Your score indicates that you are experiencing high levels of distress, and this may be very difficult for you. It is highly recommended that you talk with someone in your health care team about what may be contributing towards your distress. This can be useful in finding additional ways to cope.
The EoTS is a summary of care with minimal jargon, produced by the health care professionals within the hospital that you receive at the end of your treatment.
The EoTS aims to empower you by giving you information about your care in a clear, straightforward way. It outlines what signs and symptoms to be aware of following treatment as well as who to contact should you have any concerns. It also gives you information of further support and services that may be beneficial to you following your treatment, in addition to clear actions that will be taken by the hospital team.
Another aim of the EoTS is to strengthen communication between the hospital teams and your GP Practice. To do this, the EoTS is also sent to GP outlining any actions that may be needed to be taken by them.
It may be that you have not received this summary at the end of your treatment; please do not be concerned. You are still able to contact your team with any concerns or questions you have about your treatment and plan of care. The EoTS is a project that is continuously being developed within the specialist teams in the hospital.
If you have any further questions or wish to give any feedback about an EoTS you may have received, please contact the Survivorship Team on:
Telephone: 01743 492424
These sessions are designed to provide support throughout treatment and beyond.
The Living Well Sessions are:
- Free to attend
- Face-to-face sessions are held at different community venues throughout Shropshire, Telford & Wrekin to make them more accessible
- For anybody affected by cancer: the person living with cancer, family, friends or anybody else supporting someone living with and beyond cancer
- Available for you to attend as many times as you wish pre, during and post treatment
- Designed to offer support, advice and tips as to how to safely self-manage four topics away from the hospital setting
- Learn about local and national services that you may benefit from
- Provide an opportunity for you to share your experiences and learn from others
- Ask non-clinical questions around the four topics
Please click here for a list of dates/venues.
Here are some comments from others who have previously benefited from Living Well sessions:
“Excellent session – thank you. Good to hear other people’s accounts and experiences. You are not alone!”
“Brilliant and most useful”
“Really informative and interactive. Comforting in being with likeminded people who share similar concerns”
“ I am a carer so found the event very useful for me and my wife”
“Was lucky to meet other family members to talk about how we help our relatives, partners and ourselves to cope”
“Excellent speakers .Good to have a patient story and hear from people at different stages of treatment”
“Very informative and informal Lots of useful tips and information, Well worth taking part”
“Excellent session – warm and welcoming. Very practical”
‘After treatment, patients will move to a follow-up pathway that suits their needs and ensures they can get rapid access to clinical support where they are worried that their cancer may have recurred.’
The implementation of patient centred follow-up (PCFU) /personalised stratified follow-up pathways (PSFU), tailored to individual needs, aims to improve patient experience and quality of life for people following treatment for cancer.
Patient Centred Follow-Up is not a new concept, and commonly goes by a number of other names including patient initiated follow-up, open access follow-up, patient led follow-up, patient triggered follow-up, patient initiated appointments, supported self-managed follow-up, self-managed follow-up, see on symptom, open appointments, open self-referral appointments or patient-activated care.
Patients who complete their primary treatment and experience PCFU pathways will be offered:
- Information about signs and symptoms, which could suggest their cancer has recurred or progressed, or which may be the side-effects of treatment
- Rapid access back to their cancer team, including telephone advice and support if they are worried about any symptoms
- Regular surveillance scans or tests (depending on cancer type), with quicker and easier access to results so that any anxiety is kept to a minimum
- Personalised care and support planning and support for self-management to help them to improve their health and wellbeing in the long term.
In line with national guidance, the West Midlands Cancer Alliance is developing guidelines for all Trusts across the region, including Shrewsbury and Telford Hospitals NHS Trust. The guidance supports the redesign of follow-up pathways. This will ensure a better use of resources across the whole system, from secondary to primary care resulting in a high quality, individualised care package that supports people living with and beyond cancer. This is an ongoing project that will continue to develop throughout specialities in the future.
Background to the Cancer Care Review (CCR)
Patient cancer care contact and follow up is currently available in all GP practices. Cancer Care Reviews (CCR’s) are part of that process and so these are currently available in all GP practices.
These are done with a clinical member of staff, for example, a GP or a nurse and you can request this with your GP practice.
What is a Cancer Care Review (CCR) in Primary Care?
A Cancer Care Review (CCR) is a conversation between a patient and their GP or Practice Nurse about their cancer journey. It is essential to personalised care and helps patients to:
- talk about their cancer experience and concerns
- understand what support is available in their community
- receive the information they need to begin supported self-management.
What is the Quality on Outcomes Framework (QOF)?
The Quality and Outcomes Framework (QOF) is a voluntary annual reward and incentive programme for all GP practices in England, detailing practice achievement results. It is not about performance management but resourcing and rewarding good practice.
Changes to the QOF requirements 2021/22
In recognising the important role that primary care plays to support people after a cancer diagnosis, changes have been made to 2021/22 Quality and Outcomes Framework (QOF) cancer requirements.
The changes focus on key times of need, when patients may feel vulnerable. These include:
- at the time of a patient’s diagnosis (within 3 months)
- after a patient has received acute treatment (within 12 months).
The Macmillan Community Care Project
Cancer Care Reviews in Shropshire, Telford & Wrekin
This project is funded by Macmillan Cancer Support; the focus is to improve Cancer Care Reviews (CCRs) completed in GP surgeries through a Pilot Scheme which has recently started working with selected GP Practices across Shropshire, Telford and Wrekin.
The focus of the project is on:
- Increasing the number of Cancer Care Reviews completed within 12 months of diagnosis
- Improving the quality of Cancer Care Reviews completed within 12 months of diagnosis
- Improving the awareness of the Cancer Care Review process to patients living with and beyond cancer.
- Improving patient’s satisfaction with their Cancer Care Reviews within 12 months of diagnosis.
So what’s new?
This Macmillan Pilot Scheme now adds an additional ‘non-clinical’ part to a patient’s Cancer Care Review (CCR). It is done through our new team of Macmillan Community Care Coordinators working across selected GP practices in Shropshire, Telford and Wrekin. This can help patients with the following:
- Help with their non-medical concerns
- Look at patient and carers’ information needs
- Understand what support is available locally in and around their community
- Receive the information they need to begin supported self-management
- Receive details and signposting for support to a variety of organisations including Macmillan.
Macmillan Community Care Coordinators use the Macmillan’s Health Needs Assessment (HNA) to offer support with non-clinical patient concerns. This includes:
- Practical, such as work, financial, housing, transport or parking, washing/dressing
- Family/Relationships, including carer support
- Emotional, including loss of interest in activities, loneliness or isolation
- Social/Lifestyle or information needs, including patient or carer’s support groups, making a will or legal advice like Power of Attorney, alcohol reduction, smoking cessation or weight loss
- Benefits of physical activity or signposting to appropriate resources
- Cancer information leaflets/resources
Both the clinical and non-clinical elements of the CCR are normally completed within 6-12 months following diagnosis (usually after urgent treatment has finished). However, if a patient needs help before this, they are able to ring the GP Practice to seek this support.
At the moment, this is only available at those GP practices taking part in the Macmillan Pilot Scheme. The vision is that after the pilot, all GP practices will be able to offer the service across Shropshire, Telford and Wrekin.
If you would like an appointment with a Macmillan Community Care Coordinator, please contact your GP practice directly to see if they are taking part in the Macmillan Pilot Scheme.
If they are, they will have Macmillan Community Care Coordinator who will get in touch with you directly. If your GP Practice is not currently part of this scheme and you feel this would benefit you, please ask them to contact the team to see whether there is any availability to join.
Cancer Survivorship Improvement Facilitator: Leah Morgan
Cancer Survivorship Navigator: Katey Evans
Telephone: 01743 492424