Living With and Beyond Cancer Programme

The Living With and Beyond Cancer Programme aims to enable and empower patients to recover as fully as possible and to live well with cancer throughout their treatment and beyond.

The Programme consists of five main interventions (you can read more about these below):

  1. Holistic Needs Assessment and Care Plan
  2. Treatment Summaries
  3. Living Well Offer
  4. Cancer Care Review (by your GP)
  5. 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.

A HNA is a simple questionnaire that is given to the patient within 31 days of being diagnosed. It is a way that they can highlight the issues that they are concerned about. Everybody is individual, and their concerns may be completely different to someone else who has also been recently diagnosed.

The HNA enables the person to think about other needs they might have that they may not have considered. These could include physical, practical, emotional, spiritual and social needs.

Once the questionnaire has been completed, a health professional will discuss the highlighted needs with the patient and signpost to the relevant services or support groups. This will be documented in a care plan which is available for the person to take away for future reference. The HNA may be repeated at the end of treatment or at any other time upon request should you feel this is required during your pathway.

The HNA can be completed by any health professional but the first one will usually be completed by your Clinical Nurse Specialist  (if one has been appointed) or a member of their team. If you have not been appointed a Clinical Nurse Specialist, the HNA can also be completed by the Macmillan Information and Support Managers who are based at the Hamar Centre at the Royal Shrewsbury Hospital and within the main hospital site at the Princess Royal Hospital, Telford as well as other practitioners within the hospital.

A treatment summary is a document you receive at the end of your treatment which is produced by the health care professionals within the hospital. The Treatment Summary will be given to the patient and sent to the GP with important information post treatment.

In addition to empowering the patient/person living with cancer by providing relevant information for them to use in everyday life, it aims to strengthen the communication between the secondary care and the primary care. Secondary care services are based within the hospital setting or clinic by someone who has specialist expertise whereas the primary care setting is the day-to-day healthcare available in your local area and includes services such as: your GP, chemists and community practices and nurses.

The Treatment Summary aims to guide the patient and the GP post treatment about what actions should be taken in addition to what signs and symptoms would highlight a referral back to Secondary Care.

The Living With and Beyond Cancer Team have spent time gaining feedback from the public, GPs and Consultants about their knowledge and opinions about Treatment Summaries and what content should be included. The next stage that will take place will be a ‘Task and Finish’ group which will include practitioners from the Primary and Secondary Care Settings. It will be a platform to discuss what content and format the Treatment Summary should take.

These sessions are designed to provide support throughout treatment and beyond.

The Macmillan Living With and Beyond Programme invites you to join one of our free living well sessions.

The Macmillan Living With and Beyond Cancer Programme invites you to our online Living Well At Home sessions.

The sessions are practical and informative. Anyone affected by cancer can take part – patients at any stage of their treatment and care,  family members, friends or carers.

During these challenging times our online sessions will give you the information and support you need. By talking to other people in similar situations you will feel less isolated and alone.

Our sessions offer:

  • Useful information to help you with four common concerns (fatigue, physical activity, nutrition and emotional wellbeing)
  • Opportunities to share ideas and tips for safe self –management
  • Signposting to local and national services to get the right support when you need it most

Get the help and support you need from the comfort and safety of your own home

Upcoming online sessions will be run via Microsoft Teams. They all run 10:30am – 12:00pm and the dates for February are:

  • Fatigue and Physical Activity – 11 and 22 Feb
  • Emotional Wellbeing and Nutrition – 12 and 24 Feb

For more information or to book a place, please contact Leah Morgan on sath.lwbc@nhs.net or 01743 492 424.

To take part you will need :
• An email address
• A smart phone with sound and visuals or laptop which should have a webcam. The session will use a Microsoft Teams Video Call which is free, secure and protects your privacy. We will send you simple instructions and call you before the session to help you to take part.

Before Covid we invited people to attend our community based Living Well sessions. Over 250 people benefited from these very successful and popular sessions.

Now we cannot meet face to face so we are delighted to offer our new online Living Well At Home sessions. We want the new sessions to be as useful, friendly and supportive as our previous face to face sessions.

The sessions enable you to benefit from the knowledge and experience of professionals, other patients, family members and carers.

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”

A cancer care review is a discussion between a patient and their GP (or practice nurse) about their cancer journey. It helps the person affected by cancer understand what information and support is available to them in their local area, open up about their cancer experience and enable supported self-management

Often, with the patient’s consent, they will bring someone to support along with them so that they can act as an advocate when discussing their care. A supporter will often help turn any recommendations into manageable solutions.

The person centred follow up (previously known as stratified care pathways) enables follow-up care tailored to an individual patient. This will either take place through a supported self-management approach, with rapid access back into the specialist team should this be needed, or continued face-to-face follow up appointments with health care professionals.

Research has shown that these pathways have empowered patients to self-manage their condition. 78% of patients responding to the survey stated that they had the information, advice and support that they needed to manage their condition.

Of the patient’s that responded, 83% reported that they were more confident in managing their own care than before.

Patients also reported that the emotional impact of moving from treatment, where contact with healthcare professionals was frequent, to aftercare was difficult to manage.

In response to this evaluation, the Living Well Offer was formed. Further information about the programme can be found on this page, including the opportunity to attend a Living Well Session which offers support, advice and signposting to local services within the community as well as in the hospital. This offer is open to anybody affected by cancer. They can book on to the sessions as many times as they wish at any point within their pathway; at diagnosis, throughout treatment and after treatment has completed.

(reference: Macmillan. (2013). The Recovery Package. Available: https://www.macmillan.org.uk/_images/recovery-package-sharing-good-practice_tcm9-299778.pdf. Last accessed 11th January 2019.)

Contact Us

Programme Lead: Edith Macalister

Project Manager: Leah Morgan

Telephone: 01743 492 424