Friday 15th April 2016
Mac Voice, the magazine for Macmillan professionals: Spring 2016
Mac Voice speaks with Tracey Lloyd about her award-winning work across Wales supporting people with learning disabilities and cancer.
Tracey is a Macmillan specialist nurse for learning disabilities based in Hywel Dda University Health Board. She is also the all-Wales lead in this field for Macmillan.
The Royal College of Nursing in Wales awarded Tracey its 2015 Mental Health and Learning Disabilities Award, for a cancer awareness course she developed called Check 4 Change. Among other things, the course helps people with learning disabilities understand how to check their body for cancer, and tells them where to go for help if they notice any changes.
Tracey works closely with the learning disability charity Carmarthenshire People First (CPF) to deliver the course. She says: ‘It would have been impossible to create such a person-centred initiative without the commitment and focus from the experts at CPF.’ Tracey and CPF members Wendy Thomason and Chris Liscka have taken the course to groups and organisations all around Wales.
Handing back control
As Tracey explains, the general population is living longer, and so are people with learning disabilities. This means the number of people being diagnosed with cancer is also increasing. ‘But people with learning disabilities still die younger than the general population,’ Tracey points out, ‘and they often have two or three chronic and very complex health conditions.’
‘People with learning disabilities are often dismissed as being unable to understand serious health problems, but nothing could be further from the truth.
‘We work hard to hand back control. We designed our core educational package in consultation with people with learning disabilities. After each training session we review the training.
‘The project has transformed people’s lives by giving them an understanding of issues that affect them, but which are all too often not discussed with them.’
‘When a person with learning disabilities is diagnosed with cancer, the role of the carer is vital,’ says Tracey. ‘Clinicians usually break the bad news to the patient, but often the carer has to help explain. This is a difficult conversation and one for which they are not trained.
‘The training courses we run can help carers deliver bad news to people with learning disabilities. ‘We also run courses to support carers with the emotional effect this has on them.’
Check 4 Change courses can also help with the emotional stress of being diagnosed or having family members diagnosed.
Tracey says the project group are having an influence across Wales, by actively running ‘train the trainer’ courses.
The group also aims to improve the capacity of cancer care services to include people with learning disabilities, and to create networks between primary care, cancer services and learning disability services.
Tracey says: ‘To achieve some of our ambitious aims, we created a steering group at the beginning of the project to oversee work and ensure we didn’t stray off target.
‘We have now held two conferences with rich programmes covering palliative care, cervical screening and end-of-life care, and we have been able to get key influencers from the Welsh government to attend.
‘Our second conference was aimed at health and social care professionals in England and Wales and included 125 delegates, directors of nursing and student nurses.
‘Educating health and social care professionals about the needs of people with learning disabilities and cancer is a huge ongoing task. We are continuing to do this and are in the process of liaising with palliative care colleagues in a neighbouring Welsh health board.’
Tracey hopes that awareness and research summaries will influence data collection in Wales, so that more accurate information is gathered about learning disabilities and cancer, promoting changes where needed and impacting positively on health.
The team offers bespoke training and support to all on request. Tailored training courses have covered issues such as managing appointments and medication, understanding illness, and coping with loss.
With all of this work, it is easy to understand why Tracey won the Royal College of Nursing in Wales award. ‘Winning the award meant a great deal to learning disability nurses everywhere,’ she says, ‘because it raised our profile and is recognition for the specialist profession it is.’ Tracey donated her £500 winning cheque to Carmarthenshire People First.