Supportive Resources - CLL Clinical Nurse Specialist
Feb 2015 article written for CLLSA by Helen Knight, Chronic Lymphocytic Leukaemia Clinical Nurse Specialist at Nottingham University Hospitals NHS Trust. Helen is the first CLL specific Nurse Specialist.
Receiving a diagnosis of Chronic Lymphocytic Leukaemia can be a difficult time and a huge shock, especially if this was an incidental finding following blood tests for another condition or routine health check when you have otherwise had no physical symptoms and feeling well.
The name Chronic Lymphocytic Leukaemia can also cause a great deal of fear with many preconceptions as to what “Leukaemia” means and instant thoughts of long stays in hospital needing intensive chemotherapy and losing your hair. Fortunately this is not the case, and the way in which the diagnosis of CLL is explained at the beginning is very important.
This will be the start of a long journey and relationship between the patient and the Healthcare team.
The Healthcare Team
Once a diagnosis is made the patient will meet with their Haematology Consultant and will also be made aware of a Keyworker who will be the patients’ first port of call who will be available to the patient to speak to or meet to go through any queries or offer any support when needed. The keyworker will provide their contact details and will act as a constant point of contact for the patient. The keyworker can also signpost to other services where appropriate.
This in most cases will be a Haematology Nurse Specialist, based at the hospital. They should be easily accessible and provide easy ways to be contacted. In some smaller hospitals where there may not be nurse specialists available, the named keyworker could be the Haematology Doctor.
In order to get the most out of the healthcare team, it is hoped that the patient will have the opportunity to get to know their keyworker and meet face to face as this will help build a relationship and give the opportunity to ask questions. Appointments during monitoring can be far apart and waiting until the next appointment to ask a question can cause unnecessary increased anxiety. Your keyworker should be happy to receive your call and create an environment where the patient feels able to approach and ask any questions and feel able to talk freely about their thoughts and feelings as further lines of support may be available.
Always remember there is no such thing as a silly question! It is important to communicate any thoughts and fears to make your keyworker aware and then they can help in any way possible or signpost the patient to other services that may be available to them. Their aim will be to help the patient feel confident enough to live as normal a life as possible, safe in the knowledge that they have someone available to them at times they feel that the need support or advice.
Addressing expectations at the earliest point is very important for both the patient and the keyworker to ensure the least confusion possible and to help to reduce any anxiety by increasing the patient’s knowledge and understanding, answering questions and consolidating all information with written information to be taken home.
Talking with Others
Some patients ask how to tell their friends and family or if they should tell them at all as they feel well and symptom free. Some ask if there is anything they have done to cause this or anything they can do to make it better. Unfortunately the cause for CLL is unknown and the pathway it can take is unpredictable but we would encourage the patient to lead as normal a life as possible but sometimes this can be difficult and easier said than done.
Watch & Wait
CLL is typically slow growing with many patients going on to a watch and wait programme with regular monitoring for signs or symptoms of progression. This can sometimes be difficult to cope with as a diagnosis is made but no treatment is required. Some people are relieved by this but for some this adds to their anxiety and they may find it increasingly worrisome when their next appointment is imminent.
Symptoms & Progression
Some patients may show physical symptoms sooner than others with rapid progression or associated complications therefore requiring treatment. Some may have been monitored for a number of years, learning to live with their CLL, but then may require treatment or develop complications such as frequent infections at a later stage.
Care & Support
This unpredictability can make it increasingly difficult for patients but different levels of care and support will be required at different stages of their journey with CLL.
Possible times when extra support would be needed can vary, but broadly would take place on diagnosis, at the point when possible progression of CLL is identified, at the time treatment decision are required, during treatment, and if there are any complications requiring treatment such as repeated infections.
Although close monitoring is undertaken, the patient should contact their keyworker if they feel that things may have changed. These change may be physical with the appearances of B symptoms such as night sweats, new lumps and bumps, unexplained weight loss. Or it could be personal circumstances have changed making it harder to cope and reassurance or extra support could help. There is no wrong reason to contact your team, you should contact them with the method that you have been given and the appropriate action can then be taken, whatever that may be.
There are various other organisations that you can gain extra support if it is felt it is needed. The internet is full of information but healthcare professionals will direct you to trusted sites that are more relevant for example
Freephone Help line 0800 977 4396
Freephone helpline 0808 808 5555
Macmillan cancer support 0808 808 000
There may be the opportunity in certain areas of the country to attend local support group meetings; your keyworker will be able to let you know if there is one nearby.
The CLL Support Association also host meetings in various parts of the country to discuss relevant topics and also offer the opportunity to meet other people living with CLL.
Management, Treatment & The Mulitdisciplinary Team (MDT)
The huge increase in research has led to many more treatment options for people with CLL compared to in the past. This in turn means the increased need for easy to understand relevant information so that the patient is able to make an informed decision, although this decision will not be made solely by the patient.
A way in which the NHS is able to ensure that the correct decisions are made for the individual patient and be able to offer the widest range of treatment options including trials that may be available at neighbouring hospitals but not necessarily at the hospital attended by the patient is by holding regular MDT (Multidisciplinary Team) meetings. These are formal meetings where consultants can add patients whom they would like to discuss with other healthcare professionals with an interest in and care for patients with CLL. This is also attended by nurse specialists, and other healthcare professionals involved in the processing and reporting of tests associated with CLL. Each patient on the agenda is discussed with access to blood and scan results where necessary so that the most appropriate decision can be made. This also gives the opportunity for haematologists to share their experiences and good practice. The decisions made are then communicated to the GP’s and also to the patient at their next consultation.
The keyworker plays a vital role within the healthcare setting and will be there at any stage during the patients care. Treatment of CLL is rapidly changing and the key worker will be able to guide and support when needed ensuring the patient never feels alone.