Home Page

Date issued: April 2023

Review date: April 2025

Ref: D-387/VD/Haematology/Chronic Lymphocytic Leukaemia

PDF:  Chronic Lymphocytic Leukaemia final April 2023.pdf [pdf] 143KB

What is this new service?

We have introduced the service to help keep you well while living with chronic lymphocytic leukaemia (CLL).

CLL is a chronic cancer that is more common as we age. Patients are often diagnosed at an early stage, and it may be many years before treatment is needed. However, during this time the condition may impact on your health, and we recognise that this is more likely over time. 

We have recently been awarded funding from Macmillan cancer care to allow a CLL Cancer Frailty Nurse Specialist to join the CLL team at UHP NHS Trust.  

Our aim is to optimise fitness and keep our patients healthy while living with CLL by identifying and managing any underlying health conditions, identifying goals, and developing personalised care plans. We may also put you in touch with other health professionals who can offer support and services in the hospital or community.  Finally, the frailty service may also allow us to plan when treatment may be needed.

What are we looking at?

Frailty is a term you may have heard health care workers use. The term is often misunderstood, but in fact simply describes how people who are getting older or have long-term health conditions have more trouble bouncing back from minor illnesses, injury, or stressful events. Around 10% of people aged over 65 live with frailty, increasing to up to 50% in those over 85 (Age UK).  It can mean that small events may have a bigger impact on your health, make it harder to recover your normal level of ability after illness, or may mean you need more help with everyday tasks in the short or long term.

We are also aware that in CLL, even those who are not frail, can experience fatigue – often described as a feeling of tiredness, lethargy, or difficulty in engaging fully with every-day tasks. Fatigue can creep up on people without them knowing as the symptom can initially be mild.

The good news is there is lots that can be done to help prevent and manage the challenges of both frailty and fatigue, especially if we think ahead.

How do we propose to develop this service?

We have developed two short questionnaires to help us set up the service by assessing who might be frail and who is not and to monitor whether fatigue is becoming a problem.  

The questions will help indicate to us those people who might benefit from a more in-depth assessment or support. We appreciate you may not need the service at this time, but your responses can form a record that can help to identify any future decline in your health. To do this we may ask you to complete the assessments again in the future.

We hope that each questionnaire will take you less than five minutes to complete.  We intend to send the fatigue questionnaire out at regular intervals so that we have a better understanding of your symptoms over time. Please post these back to us in the enclosed envelope or bring to your appointment if you are attending in person. Your responses will be stored in your hospital records which may be shared with other health care professionals if needed. All responses will be treated confidentially.

What can I do to help keep as well as I can?

Here are some general tips to improve your general wellbeing even if you are not frail.

• Eat and drink well – This gives your body energy, helps avoid constipation, falls and infections.

• Keep active – It’s good for everyone to keep active to keep your muscles strong. Even a short walk will help!

• Keep your mind active – keep in touch with loved ones and friends. Consider joining local groups to avoid feeling lonely.

Points of contact

We welcome any comments you may have about this service. Please contact us via email: plh-tr.oncologyandhaematology@nhs.net or telephone 01752 432594.

If you require the leaflet in alternative format such as large print, or an alternative language please contact us.

The Patient Advice Liaison Service (PALS) can be contacted if you have any complaints or concerns related to this service.

Useful contact details:

www.macmillan.org.uk – Cancer information and support

www.ageuk.org.uk – General information and advice

ukcllforum.org – UK specific CLL information and guidance for patients, scientists and clinicians

www.cllsupport.org.uk –Patient led UK charity supporting CLL patients, their families and carers

www.derrifordcllsupport.org – Local CLL Support Group