LCA consequences of cancer position statement

Ann Muls, GI Late effects Consultant Nurse, LCA Survivorship Group member

The London Cancer Alliance West and South

Setting the scene

• Number of people diagnosed with cancer (UK): 320,467

• Long term cancer survivors x 3 over last 3 decades

• Increase per year: 3%

• Estimate 2030: 4 million cancer survivors

(Maher & McConnell, 2011; Andreyev et al, 2012; Cancer Research UK, 2012)

The London Cancer Alliance West and South

Cancer survivor: definition

“ someone who is living with or beyond a cancer diagnosis.”

The London Cancer Alliance West and South

Consequences of cancer and its treatments

“the wide range of long-term

physical and psychological changes that seem to be associated with cancer and its treatments, however long ago the diagnosis and the treatment might have been given.”

(Macmillan, 2013)

The London Cancer Alliance West and South

Summary of strategy

• Consequences of cancer and its treatments should be considered at all transition points in the pathway

• Identifying current services available

• Models of care

• Recommendations for adoption by the LCA tumour specific pathways

The London Cancer Alliance West and South

Consequences…what do we mean?

The London Cancer Alliance West and South

The London Cancer Alliance West and South

Current approach across the LCA

• Acute side-effects are routinely discussed at diagnosis

• There are risk factors but they are poorly understood

• There is no way of predicting the nature and likely

onset of consequences and its treatment long-term

Mapping current service provision

17 service providers

• 6 reported that cancer MDTs consider consequences but the extent of content is not known

• Holistic Needs Assessment is widely used

• Agreement that consequences are widespread

• Most teams refer to general services

• Some have cancer specific services: psychological support, physiotherapy, nutritional support

• Established referral pathways for common consequences: pain, bone health, urinary, financial

Optimising LCA wide management

of consequences Principles Approach

Prevent or minimise consequences

Healthier life style choices Improved imaging

Minimally invasive surgery

Targeted radiotherapy

The use of modern drugs

Inform patients of potential consequences

Introduce the possibility of consequences at diagnosis + treatment discussions

Targeted information in the treatment summary (rare, intermediate, common in occurrence)

Identify potential patients at risk

Targeted information in the treatment summary Evidence-based guidance on high risk groups Empower patients to self-identify symptoms

Assess potential consequences Regular Holistic Needs Assessment Patient recorded outcome measures linked to symptom assessment

Support patients through local care pathways

Self-management GP follows the guidance in the Treatment Summary

Cancer treatment follow-up services Specialist referral pathways

Monitor patients at risk of long-term consequences

Self-management GP cancer review

Cancer treatment follow-up services Specialist referral pathways Surveillance plans

Integration in the adult

survivorship pathway

Consideration of consequences

Consideration of consequences +

management plan

Identification of consequences

Assessment and management of consequences

Stratification of need

(Macmillan, 2013)

Recommendations across the LCA

• Adoption of the consequences position paper

• Adoption of the treatment summary as part of the

recovery package

• The role of primary care in recognising, assessing and

addressing consequences

• Review of patient information

• Development of referral pathways and management

strategies in primary, secondary and tertiary care

• Research priorities

References and picture sources

• Andreyev J, Davidson S, Gillespie C, et al. Practice guidance on the management of acute and

chronic gastrointestinal problems arising as a result of treatment for cancer. Gut 2012; 61: 179-

192.

• Cancer Research UK (2012) Incidence of cancer diagnosis in the UK.

Accessed via: http://info.cancerresearchuk.org/cancerstats/incidence/uk-cancer-incidence-statistics

• London Cancer Alliance (in press) Consequences of cancer treatments: A position statement

• Maher J & McConnell H (2011) New pathways of care for cancer survivors: adding the numbers.

British Journal of Cancer, 105: S5-S10.

• ‘Body systems’ by Body Systems Design

Accessed online 08.01.2014 via http://bodysystemsdesign.com/welcome-to-body-systems-design/

• ‘All in your head’ by Julia Gumm

Accessed online 08.01.2014 via http://en.paperblog.com/the-mind-body-connection-534582/

• ‘Money man’ by Invest in the Northeast

Accessed online 08.01.2014 via http://www.investinthenortheast.com/?tag=budget

Breast Radiotherapy Rehabilitation Injury

Service

A national multi-disciplinary service for

consequences of breast radiotherapy

Denise Moorhouse RGN

Service Manager Details and accreditations:

Royal National Hospital for Rheumatic Diseases

NHS Foundation Trust, Upper Borough Walls, Bath, BA1 1RL

• Two million people in the UK with a diagnosis of

cancer - set to grow to 3 million by 2030

• 2007 National Cancer Survivorship Initiative

launched

• “Most modern surgery, radiotherapy,

chemotherapy and biological treatments can

have consequences which develop immediately,

or become apparent years, or even decades

later.” Maher 2013

The Context

www.rnhrd.nhs.uk

Cancer Survivorship

www.rnhrd.nhs.uk

At the end of Cancer treatment…

www.rnhrd.nhs.uk

Individuals receive follow up

according to their needs.

• Most people will manage

with open access to

services

• Some will require shared

care between agencies

• Few will be complex and

require more intensive

input.

Radiotherapy Induced Brachial Plexus Injury

www.rnhrd.nhs.uk

• What is it?

• Radiation damage to the Brachial

nerve

• How many people are affected?

• Severe pain/pins and needles

(neuropathic pain)

• Lymphoedema

• Osteoporosis

• Lung damage

• Reduced quality of life

• Low mood

Facts and Figures Signs and Symptoms

may include

National Collaboration

www.rnhrd.nhs.uk

Bringing together expertise in rehabilitation

and cancer care

• Royal National Hospital for Rheumatic

Diseases, Bath

• The Christie, Manchester

• Barts Health, London

Case Study

www.rnhrd.nhs.uk

Mrs P Aged 79

Breast cancer (L) 1982, aged 47 Lumpectomy, Axillary sampling

Radiotherapy over 3 weeks = 15 fractions. Treatment delivered from 2

different machines with no tattoos or markings. No other adjuvant

treatment given

PMH –Osteoporosis , Scoliosis

Medication – Allendronic Acid 70mgs

Calcium Supplements

Lodine 60 mgs

Omeprozole 20mgs

Retired social worker, likes to eat out, loves travel – Grandchildren live

In Thailand – like to go and see them as often as possible.

Case Study cont…

www.rnhrd.nhs.uk

2003 - ( 21 years later) developed numbness and tingling in

L arm. Eventually unable to lift her arm, became heavy

and numb

2006 - radiotherapy induced brachial plexus diagnosed.

2008 - developed respiratory problems including SOBOE due

to radiotherapy damage and COPD.

Case Study cont…

www.rnhrd.nhs.uk

Presentation at clinic

Weak left shoulder, unable to raise her arm.

Lower back pain, worse with standing and at night.

Worsening neuropathic symptoms in left arm.

Walks with a stick around the house and uses a wheel chair for

going out – which she HATES!

Describes a feeling of loss of purpose/meaning of life

Needs help to dress

Unable to cut up her own food which stops her eating out

Fatigued

Case Study cont…

www.rnhrd.nhs.uk

Attended 2 day clinic at Barts

Alendronic Acid causing gastric irritation - To have IV

Zolendronic Acid 5mg yearly

Amitriptyline 10mgs for neuropathic pain.

Inhalers to mange breathlessness

Declined local Psychology services

Home adaptions and equipment to aid independence

Admit to RNHRD for inpatient programme

Case Study cont…

www.rnhrd.nhs.uk

In patient stay at RNHRD – 2 weeks

Poor posture addressed through physio, developed a

straight posture– no longer SOBOE. Now not starting the

day with a massive productive cough

Progressed form wheelchair to rolator frame for outdoor

use – went shopping by herself!

Developed techniques to manage going out without feeling

overwhelmed( relaxation and desensitisation)

Developed some independence around ADL – washing,

dressing, meal preparation etc.

Why/How did these clinical problems arise?

www.rnhrd.nhs.uk

• Random choices of RT dosages and delivery

• Lack of evidence base, national protocols or

treatment guidelines.

• Lack of modern techniques

• Inconsistent positioning therefore some areas

of breast tissue/ axilla & supraclavicular nodes

were over exposed

National Service – Patient Journey

www.rnhrd.nhs.uk

OR

Referral

Accepted onto caseload

by Prof Candy McCabe,

Clinical lead @ RNHRD

Telephone Assessment by lead nurse at RNHRD

Do not meet criteria

discharged back to

GP or signposted

The Christie

MDT Clinic

RNHRD

MDT Clinic

Bart’s

MDT Clinic

3 month follow up In patient rehab

programme OR

Inpatient Rehabilitation Service

www.rnhrd.nhs.uk

RNHRD specialist

rehabilitation hospital in the

centre of Bath

Two week individualised

programme includes

• Daily physiotherapy, hydrotherapy

and occupational therapy

• Psychology and pain management

available as required

Aims of National Service

www.rnhrd.nhs.uk

3 main clinical outcomes:

• Improvement in daily function

• Improvement in quality of life

• Improvement in pain management

To build a knowledge base about this rare

condition

To provide support and education to health

care providers on safe management of this

condition

Outcomes so far

www.rnhrd.nhs.uk

Early indications suggest:

• Reduced attendance at A&E and

GP

• Improvement in pain

• Improvement in quality of life

www.rnhrd.nhs.uk

• NHS England funding – no costs to GPs

• 3 centres

• RNHRD, Bath

• The Christie, Manchester

• Barts Health, London

• Life long service for this group

• Now recruiting patients into the service

• Service available to everyone registered

with a GP in England

Referrals

www.rnhrd.nhs.uk

Professor Candy McCabe

RNHRD

Upper Borough Walls

Bath

01225 473462

Candy.mccabe@rnhrd.nhs.uk