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15th May 2020

Our response to the latest government advice

The government has announced, in a fifty-page document, the proposed easing of certain restrictions which have operated under the Covid-19 lock-down. There is much speculation about what this means for our members.

It is becoming clear that, for CLL patients, their families, and supporters, the initial 12-week period recommended by the government for shielding will be extended to the end of June at the earliest.

This is a major issue for so many people and can be emotionally and psychologically challenging. In addition, for some of our members, it has meant disruption to their treatment as well as normal family life.

It remains to be seen, but we will, no doubt, be left with a situation where certain people will be allowed progressively greater freedom for work as well as pleasurable pursuits, such as outdoor activities. Others will be advised to remain at home and still others to stay shielded.

CLL patients, at whatever stage following diagnosis, will be in this last group since we fall within the ‘clinically extremely vulnerable’ category.

It is important to note that this group is not based on age. It is across all age groups.

Ultimately, the decision rests with the individual whether to abide by the recommended restrictions.

However, any decision must consider that CLL and SLL patients are extremely vulnerable to Covid-19 and are likely to suffer the effects of the infection far greater than the general population. For us, it can be a life-threatening disease.

For this reason, our strong recommendation is that all our patient members should continue to shield until the rate of infection has reduced to a level where it is judged to be safe. This will be based on an assessment of the prevalence of the virus in society and the availability of a vaccine. It should be remembered, however, that a vaccine may offer some, but probably not full, protection for CLL patients.  Any variation of the shielding advice will be supported by informed clinical opinion.

We are aware that this will be enormously difficult for everyone, but it is the only way in which we can be as certain as possible to avoid the infection and remain safe.
We will continue to update our members regularly with the latest advice and information. In addition, we will:

  • Continue to help all CLL patients to be registered as extremely vulnerable if they so wish.
  • Identify the help our members need in the extended shielding challenges they face.
  • Deliver support, webcasts, and guidance to help keep everyone safe.
  • Develop with experts coping strategies which will aim to help our members.

 Please do not hesitate to contact us if you have any questions or need further advice.