Living with and beyond cancer

With an ageing population more people are being diagnosed with cancer and people are surviving a cancer diagnosis due to earlier detection and improved treatments. 

People are now Living With and Beyond Cancer, therefore it is vital that support continues during and after treatment.

The National Initiative to improve outcomes for people LWBC has seen the introduction of Personalised Care and Support at UHNM over the past few years which is a series of key interventions which, when delivered together, can greatly improve outcomes for people living with and beyond cancer.

Personalised care means people having choice and control over decisions that affect their own health.

  • By 2021, every person diagnosed with cancer will have access to personalised care, including a needs assessment, care plan and health and wellbeing information and support.
  • By 2023, patient centred follow-up pathways will be in place for all clinically appropriate cancers.


The sections below will describe the main interventions of personalised care at the hospital: Holistic Needs Assessment and Care Planning; Treatment Summary and Health and Wellbeing information which along with Personalised stratified follow up pathways will provide a more integrated model of care, through a better coordinated approach between the hospital, the GP and the person with cancer.

Who do I have the assessment with?

You should complete the checklist of concerns. Help will be available if you need it. Your answers will then be discussed with a health care worker who has specialist knowledge about your care. This will often be your clinical nurse specialist (CNS) or Cancer Navigator.

Preparing for your HNA discussion

To get ready for the discussion, some people make notes of any concerns or questions they have.

You may want to ask yourself these questions:

  • Is anything bothering you about your relationships with family or friends that could be related to the cancer?
  • Are members of your family coping with knowing you have cancer?
  • Would you like to know more about local services, support groups or helplines?
  • Do you need advice on things like diet or stopping smoking?
  • Would you like advice on how to be more physically active?
  • Do you have any sexual concerns (such as erectile dysfunction or loss of sex drive)
  • Are you confused by anything that is happening with your treatment or follow-up care? Is there anything you would like explained to you?
  • Do you need help with things like finances, work or education?
  • Are you concerned about returning to work after treatment?
  • Are you worried about what the future might bring?
  • Do you feel your quality of life could be improved?
  • Do you know what signs and symptoms to look out for in case the cancer comes back?
  • Are you having any physical symptoms or side effects from the cancer or treatment?
  • Do you know who to contact if you have any problems? (for example, the contact details of your cancer nurse specialist)

Preparing for your HNA discussion

To get ready for the discussion, some people make notes of any concerns or questions they have.

You may want to ask yourself these questions:

  • Is anything bothering you about your relationships with family or friends that could be related to the cancer?
  • Are members of your family coping with knowing you have cancer?
  • Would you like to know more about local services, support groups or helplines?
  • Do you need advice on things like diet or stopping smoking?
  • Would you like advice on how to be more physically active?
  • Do you have any sexual concerns (such as erectile dysfunction or loss of sex drive)
  • Are you confused by anything that is happening with your treatment or follow-up care? Is there anything you would like explained to you?
  • Do you need help with things like finances, work or education?
  • Are you concerned about returning to work after treatment?
  • Are you worried about what the future might bring?
  • Do you feel your quality of life could be improved?
  • Do you know what signs and symptoms to look out for in case the cancer comes back?
  • Are you having any physical symptoms or side effects from the cancer or treatment?

Complete a Holistic Needs Assessment

Click this link to see a concerns checklist which you can print out. Once completed, if this identifies particular concerns you have, then either call/email your cancer nurse specialist team or the UHNM Macmillan Cancer Support Centre to discuss those issues.

A Treatment Summary is produced by the hospital at the end of treatment. A Treatment Summary describes the treatment that the person has had, the potential side effects and signs and symptoms of recurrence. It is designed to be shared with the person living with cancer and their GP.

Treatment Summaries encourage a standardised and consistent approach to sharing crucial information between the GP and the person living with cancer. It aims to inform General Practitioners and other primary care professionals of any actions they need to take and who to contact with any questions or concerns.

Benefits of the Treatment Summary

  • Highlights essential treatment information in one document
  • Helps patients to understand their treatment and any potential effects of treatment
  • The document can be shared with other professionals of their treatment, to gain access to services such as travel insurance.

The aim is to give each patient a Treatment Summary at the end of their cancer treatment, giving them the tools to understand their journey.

The Trust have committed to creating an electronic treatment summary, and this is in its first phase to make treatment summaries available to at least those people with Breast, Prostate or colorectal cancer by 2021.

Health and Wellbeing includes the provision of accessible information about emotional support, coping with side effects, financial advice, getting back to work and making healthy lifestyle choices. This support is available to patients and their families and carers before, during and after cancer treatment and it is designed to support self-management.

If you are visiting either Royal Stoke University Hospital or County Hospital, there are now touch screen cancer information directories installed in key places to allow you to access a wide range of information at any time of the day or night. This covers everything from local support groups, help with money worries, practical support available and well-being support. Please look for them at Royal Stoke in the main building entrance hall, ground floor corridor of Lyme building opposite the cash point machine, in the entrance to the Cancer Centre and at County Hospital by the entrance to the chemotherapy day unit.

For more information to support your health and wellbeing you can also visit our Macmillan Cancer Support and Information Centres at both Royal Stoke University Hospital and County Hospital or phone them on (01782 676333). 

Many people have said they find the following links helpful as their needs and areas of concern change following treatment for cancer:

https://www.macmillan.org.uk/cancer-information-and-support/after-treatment/lifestyle-and-wellbeing-after-treatment

https://www.macmillan.org.uk/cancer-information-and-support/treatment/coping-with-treatment/cancer-and-your-emotions

HOPE (Help Overcoming Problems Effectively) programme for people living with cancer:

This is a six week online self-management programme for those who have had a cancer diagnosis. The course is designed to support the person living with cancer to develop self-management strategies in a safe environment amongst others in a similar situation. They can meet people and discuss their experiences. It is available nationwide and you do not need a referral and can sign-up here yourself.

Personalised Stratified Follow up (known as Open Access Follow Up)

This is now a common form of follow up for people with, for example, colorectal, prostate and breast cancers and locally may also be called Open Access Follow Up. This is an approach which means that you no longer have to come to hospital for routine appointments if you are feeling well and do not have any worrying symptoms but allows you to call your clinical team when or if you have any worries or concerns regarding your cancer recovery. People who have more complex needs will continue to have their care professionally managed by appropriate clinicians.

 

What it means for patients

  • Information about signs and symptoms to look out for which could suggest their cancer has recurred or progressed
  • Rapid access back to their cancer team, including telephone advice and support, if they are worried about any symptoms, including possible side effects of treatment
  • 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.

 

What is Open Access Follow up (OAFU)

This is a type of follow-up which has been introduced nationally over the past 5 years to improve patients' follow-up journeys. It is offered to most patients after their initial treatment of cancer following agreed guidelines. A surgeon or oncologist will advise you if your type of cancer is appropriate to be followed up this way. Currently UHNM have using this type of follow up for patients with prostate, breast and colorectal cancers and will be introducing it in 2023 for some gynaecological, thyroid and haematology cancers.

 

Why was this introduced?
The new guidelines have been introduced nationally to enhance patient care. It has been found that patients on the traditional follow-up pathway of 6-12 monthly clinic visits often do not report new symptoms till their next clinic appointment, which can delay diagnosis of cancer recurrences.  It has also been reported that most cancer recurrences are picked up by surveillance investigations or by patients noticing changes themselves between their routine appointments.

 

How do I know I am on this type of follow up?
You will have an appointment after you have completed your treatment to discuss this. This may be after your surgery (if you do not need any further treatments) or following radiotherapy, chemotherapy or a combination of the two. You will be seen in clinic by a qualified professional for an end- of-treatment review and given all the information you need to support you.

Being on PSFU does not mean that we have discharged you back to your GP. You will remain under the care of the hospital usually for up to 5 years.

 

Where can I find more information about this type of follow up?
A detailed leaflet about the OAFU will be included as part of the patient information folder provided to you.

 

When should I call the helpline?
The helpline is available to everyone with your type of cancer so please continue to call if you have anything that is worrying you whether that is emotional or physical or you need referral for financial or practical support.

 

Once you have started on this type of follow up, it is important that you call if you have concerns about any of the following issues:

  • your ongoing treatment
  • possible side effects from your chemotherapy or radiotherapy treatment
  • signs or symptoms that are worrying to you or that we have asked you to let us know about if they occur

Will I receive a follow-up appointment if I call the helpline?
If an appointment is necessary, we will make sure this is arranged within 14 working days. If required, further investigations may be organised and an outpatient appointment arranged. Sometimes, verbal advice may replace the need for an outpatient appointment and may be supported by a written letter to you and your GP.

 

How do I contact the helpline?
There is a separate helpline number for each type of cancer, and you will have been given this when you were diagnosed. If you are unsure which number to call then please contact the Macmillan Cancer Support Centre at UHNM on 01782 676333

If your call is not answered immediately, please leave a short message on the answerphone and the team will contact you.

 

Giving your feedback

We are keen to ensure that this new type of follow up meets the needs of our patients so will be continuously auditing this and the findings will be used to make any changes needed.