Pam, a social worker from Suffolk, discovered she had breast cancer in 1982. She underwent a course of radiotherapy and went on to make a good recovery, thankfully remaining cancer free. But, more than 20 years later, the treatment that had saved her life began to cause unforeseen problems.
In 2003, she started to experience a feeling of numbness and tingling in her left arm. The sensations became increasingly painful and she gradually lost mobility and function in the limb. Following this, she started to experience respiratory problems, brought on by exertion. It took some years before the cause of both conditions was identified and Pam was finally diagnosed with radiotherapy-induced brachial plexus injury and lung fibrosis.
Luckily, she was able to self-refer to a pioneering service that aims to improve the lives of people affected by historical breast radiotherapy. As a result, her quality of life dramatically improved. Before attending the programme, she was wheelchair dependent and chronically breathless. Afterwards she began to walk again, using a rollator frame; and without any pain or undue breathlessness.
The clinic she attended was part of the national Breast Radiotherapy Injury Rehabilitation Service (BRIRS), a highly specialised service which started in 2012. The fully NHS funded programme is the first of its kind in the UK. It is available to patients registered with a GP in England, and is endorsed by Macmillan Cancer Support.
Until last year the service was managed collaboratively between Barts Health NHS trust in London, The Christie Foundation NHS trust in Manchester and the Royal National Hospital for Rheumatic Diseases in Bath (RNHRD). But is has now been centralised and is based solely at the RNHRD. The service was set up to help people with complex, chronic health problems, caused by radiotherapy treatment for breast cancer.
Helen Whitney, an oncology physiotherapist, worked for the BRIRS while it was running at Barts Health NHS trust. She explains that technological advances mean that people who have radiotherapy today are at far less risk of radiation damage than patients were in the past. Doses are now carefully controlled and accurately delivered, and surrounding, untargeted body parts are protected to minimise exposure. ‘But many people, who were treated in the past, received breast radiotherapy treatment that was quite crude, in terms of the planning and delivery,’ says Ms Whitney. ‘The treatment cycles were often prolonged and the doses were much higher.’
As a result, some previous patients who were treated for breast cancer in the past – mostly women – are now experiencing radiotherapy-induced health problems. The associated symptoms are chronic and many, such as nerve damage, are irreversible. They can also be aggravated by age-related illnesses and co-morbidities.
Marianna Shiafkou, a clinical nurse specialist for the service, says that without appropriate management patients can develop secondary complications, which may cause a significant deterioration in health, mobility and social function.
Secondary symptoms can include chronic pain and numbness; muscle weakness and imbalance; lymphoedema, pulmonary fibrosis; reduced and restricted movements and loss of function in the arms and hands. ‘Patients can also experience symptoms including breathing problems, frequent chest infections – due to scarring of the lungs – heart problems, osteoporosis and feelings of depression, anxiety and anger,’ says Ms Shiafkou. She adds that although symptoms are rare they can impact severely on quality of life, day-to-day living and psychological wellbeing.
A multidisciplinary approach
Patients with radiotherapy-induced health problems receive a holistic pathway of care at BRIRS, delivered by a highly specialised multidisciplinary team. The staff include physiotherapy and occupational therapy specialists, a clinical nurse specialist, a psychologist, a clinical oncologist, a respiratory physician, a pain specialist and rheumatologists.
Following a telephone assessment by a nurse specialist, patients attend a two-day clinic where they receive a thorough clinical assessment and appropriate advice and treatment.
Ms Shiafkou says the two-day programme aims to equip patients with ways to manage their symptoms, maintain their independence, prevent further health deterioration and improve their overall quality of life.
On the first day, each patient receives a comprehensive individual consultation with each specialist. The physio and the occupational therapist conduct a 45-minute joint assessment and Ms Whitney says they aim to make the session goal orientated and specifically tailored to each individual. ‘We have to be dynamic in the assessment, depending on their priorities and what they present with,’ she says. ‘But generally we assess neurology, posture, function and balance. And we look at the area where they’ve had radiotherapy and surgery – as these patients can suffer with incredibly tight scars, which can cause muscle imbalance, chronic pain and a reduced range of movement.’
Working closely together, the team decide on interventions such as breathlessness management or strengthening and stretching exercises.
On the following day, the patients attend a multidisciplinary therapies group, which focuses on helping patients to identify and work towards meaningful goals. ‘We highlight coping strategies and provide information about fatigue, pacing, energy conservation, relaxation techniques and the importance of exercising,’ says Ms Whitney. ‘We also talk about equipment and aids, because some of the patients have completely paraplegic arms due to their injuries, so we look at advice about arm care and positioning.’
The format of the group therapy is flexible and changes according to the particular dynamics of each patient group.
‘Some groups are made of very active people who go swimming and cycling, while others may consist of people who are having a package of care and hardly go outside,’ explains Ms Whitney. ‘So, depending on their level of independence and function, we adapt it from day to day.’
Women attending the BRIRS tend to range in age from 64 to 84 years, and the average timespan since they received radiotherapy is about 24 years. All patients complete questionnaires before attending the clinic and again three months after their visit, with results used to assess improvements in quality of life. They are asked to rate the two-day programme on a scale of one to 10. The data show that these feedback scores have steadily risen since the service started and the quality and relevance of the clinic is now consistently rated nine to 10. Three months after attending a BRIRS clinic, symptom control and psychological outcomes typically improve by 30 per cent. In addition, depression scores recorded at the three-month mark indicate a significant shift from ‘moderate’ and ‘severe’ to ‘mild’ or ‘none’.
‘The questionnaire scores demonstrate significant improvements in symptom control, physical function, depression scores and overall quality of life,’ says Ms Shiafkou.
Ms Whitney says the service has been ‘very well received’ by both patients and their families, and she thinks the emphasis on a multidisciplinary approach is central to the good outcomes the service has achieved so far. ‘Commonly what happens to these patients is that they end up getting a lot of co-morbidities,’ she says. ‘So they really benefit from being looked at as a whole person and having all of these specialists give their advice. And the outcomes show that the multidisciplinary approach works effectively.’
The service won a highly commended runner-up award at the 2013 Breast Cancer Care Awards and the team is keen to build on its success, raise public awareness and encourage the recruitment of more patients. fl
* Physiotherapists who know of patients who have radiotherapy-induced disabilities, acquired from breast cancer treatment, can refer them to the BRIRS clinic in Bath.
How to refer patients to BRIRS
Since this article was written the BRIRS national service has been centralised and now runs only at the Royal National Hospital for Rheumatic Diseases in Bath. As well as offering the two-day clinic for patients the service at RNHRD also provides residential rehabilitation, which is producing good outcomes.
The NHS-funded service is available to anyone registered with a GP in England who meets the inclusion criteria. Referrals are accepted directly from healthcare professionals and referrals to the service can be accepted under separate funding arrangements for patients who are not registered with a GP in England. Referrals should be sent to: Professor Candy McCabe, Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath, BA1 1RL. email: firstname.lastname@example.org Tel: 01225 473481