Patient-initiated follow-up (PIFU) for people with lymphoma

This page explains how PIFU will work for you once you have finished your treatment for lymphoma. If you have any questions about this follow-up, speak to the team looking after you. 

What is patient-initiated follow-up?

Patient-initiated follow-up (PIFU for short) is a type of follow-up for people who have had treatment for lymphoma and responded well to it. It offers support and education to help you take charge of your care and wellbeing. 

PIFU replaces routine follow-up appointments. This means that you can arrange a lymphoma-related follow-up appointment when you notice any of the symptoms listed below.  

How will it work for me?

• Once you have finished your treatment, you will attend an end-of-treatment clinic appointment with a lymphoma clinical nurse specialist (CNS). The CNS will give you information on any long-term risks and side effects to look out for. They will also invite you to attend an ‘after- treatment’ event called a health and wellbeing day. This will take place at the Macmillan Support and Information Service. 
• After this, you will have a follow-up appointment with your doctor every three to six months. Your CNS or doctor will advise you how long you will need these appointments for before you can move on to the patient-initiated follow-up.  
• You will then move on to the patient-initiated follow-up, unless there is a specific reason for you not to. You will be able to contact the service to arrange an appointment if you experience any of the symptoms listed below. This appointment may be at the hospital, or it may be a telephone or video appointment. Your doctor will talk to you about this in detail. 

The lymphoma team will tell you how long you will remain on the PIFU pathway. This is usually for a number of years. If you do not need to speak to a doctor or CNS in the Lymphoma Service during this time, we will discharge you back to your referring healthcare professional, for example your GP. They can refer you back to us if you need to see us again in the future.

We will inform your GP when you move on to the patient-initiated follow-up. If your GP or your contact details change at any point, please call us on 0202 3447 9443 to let us know.

What are the benefits of patient-initiated follow-up?

We know that coming into hospital for routine follow-up appointments can often make people anxious. For some, it is also an additional expense, especially if they don’t have a specific concern they wish to discuss with a healthcare professional. Others may not report any symptoms that they are worried about straight away if their routine appointment is not ‘too far away’. Being part of the PIFU pathway means that you can let us know what you’re worried about sooner. It also means that you do not have to come to hospital when you feel well. 

What are the risks?

There are no risks associated with PIFU. 

Some people think that regular follow-up appointments at the hospital can help to pick up recurrence of cancer. But there is no evidence to support that. 

Even though you will not have regular hospital appointments, you will be able to contact us whenever you have concerns that you would like to discuss. 

What are the alternatives?

In some exceptional circumstances when PIFU may not be suitable for you, your doctor or CNS will talk to you about this. You can also talk to them if you have any specific concerns. 

Who do I contact if I need advice or support?

Please contact the lymphoma CNSs on 020 3447 7359 (Monday to Friday, 9am to 5pm) if: 

• you have any concerns about how to manage your health and wellbeing following your treatment 
• you develop any new symptoms (please see the list below) 
• any symptoms you had in the past have now returned. 

If no one is available to take your call, please leave a message including your name and contact number. A CNS will return your call within the next working day. 

Symptoms to look out for

• New lumps 
• Persistent cough or breathlessness 
• Persistent abdominal pain 
• Generalised itching or persistent rash 
• Unintentional weight loss 
• Unexplained fevers over 38C 
• Recurrent drenching night sweats 
• Numbness, tingling or weakness in a limb 
• Problems with your vision, memory and/or balance 
• Extreme tiredness 
• Any other new symptom that is worrying you. 

Patient portal 

You will be able to see the details of the symptoms to watch out for in the patient portal MyCare UCLH. Our contact details and information on how to get in touch will also be available in the portal. Please talk to your care team if you would to sign up to MyCare UCLH.