Supported self-management is part of the NHS long-term plan. It aims to put people affected by long-term health conditions, including lymphoma, at the centre of their health care. It looks at the whole person. It considers your individual strengths, needs, preferences and the support you have access to.
An overall goal of self-management is to help you take control of your health and wellbeing so that you can live well, physical and emotionally, with and beyond lymphoma. It involves keeping track of any symptoms you might be experiencing as well as taking care of your overall health.
To help you develop skills, knowledge and confidence to take care of your health, supported self-management approaches might include the following:
- Health coaching – where you are supported to identify any current health issues and to take steps to manage your general health and wellbeing effectively.
- Self-management education – which involves more formal education or training. Examples include our Live your Life workshop and Macmillan’s HOPE (help to overcome problems effectively) programme.
- Peer support – where people with similar long-term conditions or health experiences support each other to understand and manage their condition and to help their recovery. Peer support might be through a formal programme, or a more informal one, such as our buddy service or support groups.
Remote monitoring is a type of supported self-management. It’s a way for you to keep in contact with your medical team to check your health without you having to go for face-to-face appointments so often.
If you are on remote monitoring, you might have a blood test at your GP surgery to check:
- your full blood count
- your liver, bone and kidney function.
You and your GP should both receive a copy of the results of any tests or scans you have. If the results are normal, you might not need an appointment with your medical team. However, you can ask for one at any time if you have concerns you’d like to talk through.
How long does remote monitoring go on for?
Some hospitals offer follow-up appointments on request for the rest of your life. Others discharge you if you stay well for a set amount of time, which is sometimes after 2 years. Your GP then becomes your main point of contact for any concerns you have and can refer you back to your medical team if necessary. Many hospitals also provide contact details of the haematology department if you have any concerns about relapse and would like to talk to a member of your medical team.
Who might remote monitoring be suitable for?
Your medical team should discuss with you how they recommend that your follow-up should work and why.
If you are at low risk of relapse, you might be offered remote monitoring. However, not all hospitals offer it, even if you meet these criteria. If you are offered remote monitoring, it is up to you whether you choose to have follow-up in this way.
There are lots of reasons that remote monitoring might not be suitable for you. For example, if you would prefer closer monitoring or if you’ve been treated as part of a clinical trial. In this case, your follow-up care is set out in the trial protocol, which outlines how the trial should run.
In some cases, there might be a possibility to have patient-triggered follow-up. This is also a type of supported self-management. Instead of traditional follow-up (a schedule of regular pre-booked in-person appointments), you book your own follow-up appointments when you need to. For example, if you:
- notice any new or worsening symptoms
- are worried your lymphoma might have come back (relapsed)
- have long-term side effects or late effects of lymphoma or its treatment.
You can also speak to your clinical nurse specialist at any time if you would like any practical or emotional support.
Your health professionals want to empower you to take an active role in your health and wellbeing from the point of diagnosis, through treatment and beyond. There are lots of potential benefits of self-management, including:
- having the knowledge, confidence and skills to live well physically, emotionally and socially
- recognising possible late effects and signs of recurrence, so that you can ask for medical attention early
- being involved in discussions with your medical team and making decisions about your long-term health care
- having a greater sense of independence and control over your situation
- having fewer pre-booked hospital appointments.
Some people prefer this approach of booking appointments as and when they need to – they find it more convenient to their lifestyle. For some people, it reduces the anxiety that comes with having a set of pre-arranged appointments in their diary.
The NHS also reports that people with high confidence, skills and knowledge about their health condition have fewer GP appointments and fewer A&E attendances.
Some people feel nervous at the thought of self-management. They think that fewer hospital appointments means a higher risk of recurrence that goes unnoticed. In reality, your medical team fully supports you throughout. Help and advice is always available if and when you would like it.
There is no evidence that regular follow-up appointments stop lymphoma from coming back, being noticed earlier, or affecting how long you live. Generally, as the person who’s been diagnosed with lymphoma, you are more likely to first notice any problems. If you notice anything unusual or have any concerns, you can contact your medical team. They can offer advice and might arrange for you to have further tests if necessary.
Supported self-management should include information from your medical team before you start remote monitoring so that you know about:
If you notice any of these signs, or you have any concerns about your lymphoma, you can request an appointment.
You should contact your medical team to book a follow-up appointment if you have:
- swollen (enlarged) lymph nodes lasting more than a week
- drenching night sweats
- unexplained weight loss
- worsening fatigue
- itching (pruritis)
- rash (if you have a skin lymphoma)
- unexplained, ongoing or worsening pain
- new or worsening side effects, possible side effects or late effects of your treatment
- any other concerns relating to your lymphoma or your treatment (for example, difficulties eating or fertility concerns).
If you would like support in coping physically or emotionally, your clinical nurse specialist is usually a good point of contact.
Some people find the idea of remote monitoring daunting. However, many people like the approach once they’ve had some time to get used to it. After a while, they start to gain confidence in their knowledge and abilities to manage their health effectively.
There might be reasons you’d prefer to have traditional follow-up. If you are offered follow-up by remote monitoring, you don’t have to accept it – speak to your medical team about your options.
Some people monitor changes in their symptoms or how they’re feeling using a diary. Resources like Macmillan’s organiser can also help you to do this. You could also consider using wearable technology to monitor things like your activity levels, sleep pattern, heart rate and blood pressure.
Living with and beyond lymphoma is a process of continual adjustment, both for the person diagnosed, as well as for their family and friends. There is support available – speak to your clinical nurse specialist, or contact our helpline team to find out how we can support you and those close to you.