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Providing support to anyone affected by blood cancer
The Campaigns and Advocacy team at Leukaemia Care work to represent patient interests and views when decisions are made that affect them. They do so alongside other blood cancer charities and patient advocate groups. This year the C&A team have expanded to three members: Zack, head of C&A, and two C&A officers, Nick and Bethany. So, what do they do to improve the lives of patients?
Campaigns focus on a particular issue in the blood cancer journey. The latest campaign ‘Spot Leukaemia’ (pages 4 and 5) focuses on the diagnosis experience of patients.
Previous campaigns have focussed on other areas. For example, during the ‘Cancer Lottery’ campaign we were inviting people to sign a petition calling for NICE to introduce a fair appraisal process to consider drugs developed for patients with rarer cancers.
The advocacy toolkit is a monthly piece of advice written for patients to help them self-advocate. Some of the topics available are: ‘The NHS constitution – what are my rights?’; ‘Health Technology Appraisals’; ‘Discrimination and Cancer’; and ‘What is immunotherapy?’.
Health Technology Appraisals (HTA)
We are involved in HTA processes across the UK by NICE (England), the SMC (Scotland), and the AWMSG (Wales). We independently act as a voice for blood cancer patients, providing information on how treatments could improve quality of life for patients and ensuring their interests remain at the centre of the decision making process. You can read latest updates on HTAs in the news section: leukaemiacare.org.uk/news
Patient Advocacy Groups
Both global and UK advocacy groups are networks of advocates that act as one voice to bring about change for the patients and ensure their opinions are represented across all relevant areas of healthcare.
UK groups for rare cancers include Cancer 52 and the Cancer Campaigning Group (CCG). There are also global groups, which the team are involved with. Zack is chair of the Acute Leukaemia Advocates Network (ALAN) and the European representative on the steering committee of the CML advocates network. Nick is, also, on the steering committee of the chronic lymphocytic leukaemia advocates network (CLLAN)
Our GP tool contains two e-Learning modules on blood cancer, developed in collaboration with the Royal College of General Practitioners. The modules are designed to help empower primary healthcare professionals, who may only see 1 case of blood cancer every 2/3 years, to recognise potential cases and send patients for relevant tests quicker.
If you have a patient who needs help in self-advocating, or advice in accessing treatments, you can refer them to the advocacy team in the following ways: call our office line on 01905 755977; send them an email at firstname.lastname@example.org; or call the helpline, free of charge on 08088 010 444 anytime. They will pass your enquiry onto the Campaigns and Advocacy team.
Please note that our Campaigns and Advocacy team are unable to provide: detailed medical advice or recommendation; legal advice; or advocacy for a course of action which is contrary to the aims and objectives of Leukaemia Care.
Campaigns and Advocacy Officer, Bethany Torr gives us the flavour of a typical day in the busy Leukaemia Care department.
One of the great things about working in Campaigns and Advocacy is that two days are never the same. Unless you have 10,000 envelopes to pack with campaign material, which takes 3-4 days even with the whole office helping! My role largely focusses on producing content for our work, such as the advocacy toolkit, articles and materials relating to the campaign and news posts on HTAs. While the formats may stay the same, there's always a new topic that needs to be learnt and a tailored approach needs to be taken to suit the varied audiences we communicate and work with.
This is my favourite part - we have the opportunity to work with people from all areas of the blood cancer community. Even in my short period of time working at Leukaemia Care, there's been numerous meetings with other charities, advocates, and healthcare professionals who join together with the collective goal of improving the lives of cancer patients.
Ultimately, this is what our work is for. I'm honoured to get to speak to and meet with patients, hear their stories and use their experiences to improve the future experiences of blood cancer patients.
To speak to Beth or anybody from the advocacy team, please email email@example.com or ring 01905 755 977.