Welcome to the autumn edition of your newsletter.
It certainly does not feel like autumn at the time of writing and the sun is still shining. However it is important that we ‘look forward’ to winter and ensure that we are fully protected from infections by taking advantage of the vaccinations available to us. All CLL patients and carers know to have the flu vaccine and, if you have not had it for five years, you are advised to have the pneumococcal vaccine. Ensure that your health centre is aware of the needs of immunocompromised patients because some of the local guidelines may not be as comprehensive as they should be and you may miss out.
Vaccination strategy was an important topic at the recent members’ meeting in Oxford which was well attended and seems to have been well-received by all who attended. Another important theme of the meeting was the importance of ensuring that power brokers in Government and the NHS are aware of the health needs of CLL patients and their carers when decision are being made about resources.
The trustees and a number of volunteers have initiated a number of strategies to ensure that CLL patients are represented in discussions about research for treatments, health policy and health care delivery. We are developing our working relationships with other national haematological cancer charities, improving links with pharmaceutical companies and we have been represented on some of the NICE committees to review the efficacy of CLL drugs. However, there is still much work to do, particularly during this period of transition in the NHS and at a time when there are significant new advances in the development of less toxic treatments for CLL.
All members are encouraged to look for opportunities to raise the profile of CLL by responding to the opportunities available for patients to become more actively involved in the new NHS structures. Patient participation group are being established locally, regionally and nationally and it is important that such groups are constantly reminded that CLL should have as high a profile as other conditions. There are some who regard CLL as less of a priority than other conditions because they believe it can be ‘managed well’ in the majority of cases.
If you are already a member of a local or regional NHS group, it would be useful to know so that we can map our involvement in the developing NHS infrastructure and ensure that you are fully supported if this is necessary. Also, if you would like to volunteer some time to be more actively involved in this work, it would be much appreciated. If you are interested you can email me at firstname.lastname@example.org to discuss how you might be involved. Thank you for your support and stay well.