Living with and beyond cancer (LWBC)

Getting started

With so many more people surviving cancer but living with ongoing effects of cancer treatments, we have put together a resource pack for primary care. This pack is designed to be accessed by any member of the primary health care team who has patient contact. Opportunities to provide support and advice may occur during treatment room consultations as well as with the GP, and this guide aims to help Primary Care to build skills throughout the practice team, with the aim of better supporting cancer patients and their families.

The Macmillan helpline number is 0808 808 0000 (open 8am-8pm 7 days a week) and the website is https://www.macmillan.org.uk/

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How to download the updated Cancer Care review template in EMIS:

Search for the Macmillan Cancer Care Review template within your EMIS system by following this pathway: Templates & Protocols > EMIS Library > Primary Care Template > Macmillan Cancer templates folder in EMIS Library

The Primary Care Cancer Toolkit:

RCGP Primary Care Cancer Toolkit

QI methodology website: Institute of Healthcare Improvement - Model for Improvement

A risk assessment guide that you can save to your desktops for assessing patients on chemotherapy or immunotherapies: ONCOLOGY/ HAEMATOLOGY PRIMARY CARE RISK ASSESSMENT TOOL

Macmillan resources for Primary Care

Guidance from Macmillan on Cancer Care reviews

Macmillan Primary Care update newsletter

• GP Advisers, with the support of GPs and the wider Macmillan team, produce a quarterly e-newsletter to inform GPs, primary care cancer leads and the wider primary care community. It includes the latest developments, learning and case studies relating to cancer across primary care. To receive this quarterly newsletter please sign up here

Identifying your concerns checklist for patients: This can be given/sent to patients before their cancer care review appointment, to help them organise their thoughts and highlight significant concerns:

•  Standard format  
•  Also in an easy read format

Financial advice

Citizens Advice Bristol Macmillan Benefits support: Help check eligibility for benefits/grants and support patients to claim anything that they may be entitled to. They also help when patients that are living with cancer have wrongly been refused benefits.

• Referrals are mainly from cancer support workers and specialist cancer nurses but referrals from GPs and other health professionals are encouraged as part of a social prescription pathway.
• Self-referrals from patients are accepted.

For further information contact macmillan@citizensadvicebristol.org.uk or 0117 946 2563.

Cancer Support at NBT

NBT Macmillan Wellbeing Centre

Open to offer holistic support to patients, family members and friends affected by cancer.

Monday – Friday 08:30-16:15 excluding Bank Holidays

Tel: 0117 414 7051

The Centre offers a drop-in for coffee and a chat, or can arrange an appointment for specific needs.

Support and a warm welcome in a non-clinical environment

• Information leaflets
• Advice and Support
• Health promotion
• Information about support groups
• Quiet room
• Signposting to other services

Support services from NBT and the community

• Holistic needs assessments and care planning with a Cancer Support Worker
• Health and wellbeing events
• Self-management courses
• Physiotherapy
• Dietician
• Access to psychological support
• Benefits advice
• Complementary therapy
• Craft groups
• Arts on Referral

Living Well Cancer Psychology Team

The Living Well Cancer Psychology Team do not take referrals directly from GP’s.

However, GP’s can contact the service via email: PsychologyCancerTeam@nbt.nhs.uk to discuss a possible referral if the person fits the criteria below:

• Patient is under an NBT Cancer Consultant  
• Patient is living with or beyond cancer
• Patient is seeking support relating to their cancer
• Patient has consented to this psychology referral

The psychology team will then discuss the referral with the medical / CNS team involved with the patient, to discuss a possible referral to our service.

Cancer Support at UHBW

Late effects of radiotherapy

Late effects of radiotherapy (developing 6 months or longer post treatment) are manifold and, depending on site, may include bowel and bladder disorders, sexual dysfunction, fatigue, and damage to a specific organ such as the heart.  These physical symptoms can have a significant impact on quality of life, often leading to emotional distress. Not all patients will develop late side effects, much depends upon intrinsic and extrinsic factors such as the radiation dose, the number of treatments delivered and whether the patient has any co-morbidities.

Late effects can develop after many years and are therefore not always associated by the patient with his or her previous cancer treatment. 

Bristol: Bristol Haematology and Oncology Centre, supported by Macmillan, operates a “Radiotherapy Late Effects Service” offering specialist advice for patients who develop symptoms as a consequence of cancer treatment. 

Cancer Information and Support Centre | University Hospitals Bristol NHS Foundation Trust (uhbristol.nhs.uk)

It offers a range of strategies including assessment of symptoms with appropriate diagnostics, patient information, treatment care plans and simple medications. Onward referral to other health care professionals is made where appropriate. Please see the inclusion and exclusion criteria on the attached referral form and email to: lateeffects@uhbw.nhs.uk

Further advice or information contact the Late Effects Team by email or Tel: 07825053814 

Late Effects Support is also available at Taunton and Bath

Taunton: https://www.somersetlmc.co.uk/tauntonradiotherapylateeffectsservice

Bath Complex Cancer Late Effects Service: The Complex Cancer Late Effects Rehabilitation Service (CCLERS) is a specialist rehabilitation service for people experiencing unresolved persistent pain and reduced physical function due to the consequences of treatment for cancer (any tumour site). Referrals to Professor Candy McCabe, Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath, BA1 1RL Email: candy.mccabe@nhs.net

For any enquiries please contact the CCLERS administrator on: 01225 473 481 Or email:  k.cuss@nhs.net

Advice on specific conditions

Immunotherapies: an article explaining how they work, and an infographic (side effects)

Managing long term effects of treatment for Gynaecological cancer: There are other treatment guides available on the RCGP toolkit.

Natural non-hormonal lubricant and vaginal moisturisers: https://www.yesyesyes.org/products

Menopause Oncology Clinic UHBW has been awarded funding to run a pilot menopause service across BNSSG which includes a menopause oncology clinic - See the Menopause page of Remedy for further details.

RADAR keys for bowel/bladder urgency:

https://www.ageukincontinence.co.uk/incontinence-shop/toilet-aids/disabled-toilet-keys.html

Late effects of cancer treatment - information from Macmillan on side effects from treatment and new symptoms or problems after treatment.

Useful resources for understanding side effects and consequences of treatment – for example what advice to give for peripheral neuropathy (such as reducing risk of falls, protecting hands and feet).

Cancer Fatigue

Advice on how to manage cancer fatigue:

What is cancer fatigue? | Coping physically | Cancer Research UK

Advice on the causes of cancer fatigue:

Causes of cancer fatigue | Coping physically | Cancer Research UK

Overview of cancer fatigue causes, how to manage and practical tips :

Tiredness (fatigue) | Macmillan Cancer Support

Specific sleep management advice::

Adults - The Sleep Charity

Resources

Health & Wellbeing repository

Resources Archive - SWAG Cancer Alliance

This gives advice on cancer resources, groups, information & blogs accessible in the south west.

Cancer Care Map - SWAG Cancer Alliance

Provides a guide to support services, activities and therapies to help people living with cancer within the SWAG Cancer Alliance.  

Additional Services

To find additional services within BNSSG please use your MiDoS Login: Login - MiDoS Admin - 2019 (midosweb.co.uk) If you need your password resent, or be issued with one, please contact: Dosteam.southwest@nhs.net

Efforts are made to ensure the accuracy and agreement of these guidelines, including any content uploaded, referred to or linked to from the system. However, BNSSG ICB cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties.

Information provided through Remedy is continually updated so please be aware any printed copies may quickly become out of date.