Leukaemia CARE, UK
Leukaemia CARE, UK, was initially set up in 1967 as an informal support group started by parents with children in whom leukaemia had been diagnosed.
“A group of parents got together around a kitchen table to help each other prepare for, or come to terms with, the death of a child as, at that time, a leukaemia diagnosis would often result in death,” said Zack Pemberton-Whiteley, Head of Campaigns and Advocacy at Leukaemia CARE.
In 1969, Leukaemia CARE was registered as a charity. In the 1980s, Leukaemia CARE grew from providing support for those with childhood leukaemia to encompass all forms of leukaemia, in all age groups. Later in the 1980s, the organisation expanded again to provide support for all blood cancers and other blood disorders, as there was not a lot of support available.
“This has now changed, particularly with the presence of the Lymphoma Association in the UK. Where possible, we work together so as not to duplicate efforts,” he said.
Zack is one of 20 people on staff at Leukaemia CARE. Prior to joining the organisation in 2014, he had just completed a law degree.
“I saw the word ‘advocacy’ and liked the idea of representing people who did not have a voice or who, through not understanding the process, might lose out,” he said.
Leukaemia CARE approaches advocacy both in their broader policy work and, at the same time, supports individual cases as both are necessary.
Focus of Leukaemia Care
The primary focus of Leukaemia CARE is the support of anyone affected by a blood cancer, ensuring that they receive the right information, advice and support.
“Predominantly, it is patients and carers looking for support but it includes all family members and friends.” said Zack.
Leukaemia CARE provides support for all blood cancers, including lymphoma.
“When Leukaemia CARE receive requests for information about lymphoma, we also tell them about the Lymphoma Association, who may be able to provide further support,” he said.
Practical Support for Patients and Carers
Help is provided to those with a blood cancer and their carers in a number of ways.
Leukaemia CARE’s 24-hour CARE line is a key service, ensuring that support is always available to those who need it, any time of day. It is operated by staff during office hours and volunteers after hours. Approximately 15 to 20 volunteers help out with the CARE Line. These volunteers can be patients, survivors or carers.
“We try and have a broad mix to meet the needs of callers. It is often better if a carer speaks to another carer than a carer to a patient,” he said.
Leukaemia CARE also has a nurse advisor on the CARE line to provide support and advice from a clinical perspective.
“At the moment, the nurse answers medical queries two evenings a week but this will become a full-time position later in 2016,” he said.
Patients and carers can also get help from Leukaemia CARE through Live Chat, an online messaging service. Operating during office hours, it connects users to a member of the CARE line team or the nurse advisor.
There is also a one-on-one buddy support system.
“Through our Buddy Support Service, a patient can be put in touch with another patient who is in a similar situation,” he said.
Support groups also form part of the practical support provided by Leukaemia CARE.
“We have 20 support groups spread across the UK with the majority focusing on all blood cancers,” he said. Some, however, focus on a specific blood cancer.
“In Cardiff, there is a group that focuses on chronic leukaemia, namely chronic lymphocytic leukaemia (CLL) and chronic myeloid leukaemia (CML),” he said.
The frequency of support group meetings as well as the number of attendees depends on the needs of the group and how long the group has been in existence.
Leukaemia CARE also holds conferences for patients and their families. At these one-day events, attendees have the opportunity to ask questions about specific diseases as well as listen to eminent professional speakers and medical professionals. Attendees can also participate in breakout sessions to learn more about their specific subtype.
“Some of these conferences are held in partnership with the Lymphoma Association. We hold two joint patient and carer conferences every year, in addition to our standalone conferences,” Zack said.
Leukaemia CARE has also created a series of patient information booklets. Some of these are disease-specific booklets, such as CLL, but there are also booklets that examine issues such as watch and wait, the emotional aspects of dealing with a blood cancer and managing side effects.
“If people want booklets, we also tell them about the Lymphoma Association, who have an extensive range” he said.
Issues for Patients with Lymphoma
Patients with lymphoma are confronted by a number of issues in the UK including a need for greater awareness about lymphoma as well as earlier diagnosis for all blood cancers.
“Emotional and psychosocial support are also key particularly for those who are going to live with a blood cancer for a long time,” said Zack.
Access to treatment is an issue for all forms of blood cancer. Through its Cancer Lottery campaign, Leukaemia CARE has been working to raise awareness about the issues patients face accessing treatment.
“In the UK, reimbursement for the newest treatments is particularly challenging,” he said.
Since 2011, patients have been able to access treatments through the Cancer Drugs Fund (CDF), which were not otherwise routinely available within the NHS, because they had not yet been approved by the National Institute for Health and Care Excellence (NICE). The CDF is for patients living in England and has enabled over 95,000 cancer patients to access treatment.
However, the CDF has recently been reformed. With the changes to the CDF, temporary funding will be provided for drugs with a draft recommendation from NICE and also for drugs where there are uncertainties as to the benefit of the therapy. In this situation, data will be gathered for an additional two years to determine the amount of the benefit and then NICE will make its final decision about funding.
The NICE process, however, is not suited to assessing small patient populations for rarer cancers, which is the topic of the Cancer Lottery campaign.
“The problem we’ve been campaigning on is if you have a very small patient population, there is often not enough data and NICE would likely still not approve the treatment. At the moment, NICE is unable to be flexible. But the person who is suffering is the patient with the rare cancer. It is the smaller patient populations who are disadvantaged,” he said.
Leukaemia CARE is hoping that NICE will change its process to be more accepting of data for rarer cancers.
Education Initiatives for Healthcare Professionals
Leukaemia CARE provides continuing education for healthcare professionals.
“We arrange an annual conference that is primarily targeted towards haematology nurses,” Zack said. This one-day event is usually attended by 30 to 50 nurses. Speakers include nurses, haematologists and patients.
For general practitioners (GPs), Leukaemia CARE worked with the Royal College of General Practitioners to develop two 30-minute online modules in an effort to help GPs recognise blood cancers. The first module provides background information about blood cancers and the second one includes patient case studies that examine different aspects relating to blood cancers.
“We launched the GP eLearning Resource in September 2015 during blood cancer awareness month. GPs don’t see blood cancers very often, maybe only one blood cancer in a year. We’re hoping this programme will improve awareness,” he said.
Since launching the programme, over 500 GPs have taken it. No assessment has yet been done to determine if there has been any change in practice as the programme has only been operating for a short time.
The London Marathon Fundraiser
One of Leukaemia CARE’s main income streams is the London Marathon, a yearly event held every spring since 1981.
“We have between 100 and 150 runners every year who donate the money they raise to Leukaemia CARE. This brings in a lot of our income. In fact, the London Marathon is one of the biggest fundraisers in the UK for many charities,” said Zack.
Most of the places available in the marathon are charity places whereby people running in the marathon agree to raise a set amount of money for a charity of their choice. Those running the marathon on behalf of Leukaemia CARE have to agree to raise £2,150 each.
Grateful thanks to Zack and the team at Leukaemia CARE for making a difference in the lives of both those with a blood cancer and their carers.