Important Lifestyle Changes: Self Management

What is self-management?  

Self-management is about having the knowledge, confidence, and skills to manage our health on a day to day basis.

This might be about managing symptoms, medications and appointments with health and care professionals. But it is also about the wider context of managing the emotional rollercoaster of living with a long-term condition, navigating complex welfare, health and social care systems, and balancing the practical things that are an important part of daily life, such as hobbies, work, family life and seeing friends.  

Sometimes, self-management is described as a juggling act between the medical, emotional and day to day impact of a health condition. You might hear health and care professionals refer to this as a biopsychosocial approach.  

Although the term ‘self’-management focuses on what you can do, the language used by the NHS at the moment refers to ‘supported self-management’, which emphasises that this isn’t something you have to do all by yourself. Health and care professionals are receiving training to better support people to develop self-management skills as part of a national policy around ‘personalised care’, and services are being developed and improved to help people feel they have more choice and control in managing their conditions and living their lives. Personalised Care 

How do I get support to self-manage?  

Part of self-management is about being resourceful and knowing where to find the right kind of help when you need it. Trying to navigate services and finding what works for you can be challenging. Although services may be delivered differently in local areas, here are some of the common ways NHS services can offer self-management support: 

• Health coaching – this is often delivered one to one, through face to face or telephone sessions.  Together you work through what is important to you and identify personal goals. Then you are supported with action planning and problem solving to achieve these goals, as well as some general tools and strategies around managing common symptoms such as pain or fatigue. 
• Self-Management Support Programmes – these are group sessions that focus on different aspects of self-management, such as working with health and care professionals, managing symptoms and communicating with family and friends about how we feel. These are not condition specific but cover the general principles that many people with different conditions experience. There isn’t a standard name for these courses, but they are often linked with a health coaching service and provided on the NHS. 
• Social Prescribing – there are many different ways that social prescribing is delivered, but most services are about supporting people to connect with resources, groups and activities in your local community that can help with general health and wellbeing. Knowing about some of the local things available and having the confidence to go along can be difficult, so link workers are specifically trained to support people with this. Most commonly, a link worker (or social prescriber or community connector) is based in a GP surgery or local community organisation and could work with you face to face or over the phone to support you.  Building a personal network based on interests and hobbies can help with isolation, mood and feeling connected to our local communities.  
• Apps – there are a wide range of apps that can help people manage different aspects of their health and wellbeing. The NHS App Library contains many different apps that have been assessed by the NHS as being of a high standard and clinical appropriateness. Depending on what aspect of PoTS or your general health and wellbeing you are trying to manage, you can find apps for exercise, relaxation and tracking symptoms.
• Getting online access to your own records – this can help manage the medical aspect of your health and help reduce some of the administrative burden of being a patient. Speak to your practice – depending on the surgery, you can use these online services to contact your GP, order repeat prescriptions, book appointments, see parts of your health record and communications between your GP and other services. See here for further information.   
• Peer support – Health and care professionals can be important sources of support, but don’t forget other people who live with PoTS – peer support is often how people find out about some of those useful little “life hacks”, which can make every day practical tasks easier to manage. While connecting with people who are living with PoTS can be very useful, some of the wider communities of people living with health conditions who also experience symptoms such as fatigue and pain can be helpful too.  Details of PoTS UK online peer support groups can be found here.
• Asking for support – Ensuring you have all the right benefits to support your self-management: this might include self-directed payments or personal budgets as well as core benefits. For more information, see: https://www.nhs.uk/nhs-services/help-with-health-costs/what-is-a-personal-health-budget/ .

Remember there is lots of information on the rest of the PoTS UK website about self-management of specific symptoms such as fatigue, fainting or our mental health.  

Some top tips for managing a healthcare appointment  

One of the reasons self-management is so important is because of the small amount of time each year that we actually see health and care professionals, compared with the vast number of hours each year that we are managing by ourselves. This makes what we do ourselves really important, but it is also crucial that we make those precious few hours with health and care professionals really count.  

• It is ok to take off the “I’m fine” mask you might feel you have to wear the rest of the time when people ask us how we are. It is important to be honest about how you are struggling, so health and care professionals get the full picture of how difficult things might be for you.
• Be honest about what you understand about your own anxiety and share this insight with the professionals you see. Particularly with PoTS, many of us might have had experiences of our symptoms being brushed off as ‘anxiety’. While we might acknowledge that a small proportion of our symptoms are exacerbated by anxiety, there are core symptoms which are beyond this. Similarly, with fatigue, contrasted with the normal tiredness you might experience after a busy day or exercise. By sharing our insight into normal things that can trigger symptoms, we can be ready to challenge the assumptions professionals might make and reinforce that there is something more going on.
• Don’t be afraid to ask for support – sometimes professionals may give the impression that being an ‘expert patient’ or confident self-manager means you don’t need further support. Often it means that when you do reach out for support, it is more of a crisis and more important that you do get help. Even healthcare professionals who have conditions and might be considered experts, still need help! It might be that some professionals need to understand a bit more about PoTS – there is information for healthcare professionals on the PoTS UK website that you could signpost them to, for example. 
• You might be seeing multiple different professionals, so trying to get them to talk to each other can feel challenging! Making sure they have the details of the other people you are seeing can be helpful. You might want to ask directly to see different types of healthcare professionals that might not have been directly suggested already – such as occupational therapists, physiotherapists or counsellors, as well as the health coaches and link workers mentioned above for support with self-management and social prescribing respectively.
• Take copies of letters to your appointments – sometimes letters don’t always get to all the professionals who need to see them and they might not be up to date. By having copies with you, you can share these with the professional in your appointment, to help them with the latest updates.  Having a way of storing your health information will help have this to hand – be it a ring binder of letters or an electronic store of emails.
• Recognise frustration on all sides – while it has a massive impact on your day to day life, it is also often really frustrating for people who work in the NHS and social care services (clinical and non-clinical roles), who want to help you but feel constrained by resources and options available. 
• Much of the advice about managing a health appointment includes making a list of the key questions you want to cover. In addition to this, prioritising the list by the questions that are most important to get an answer to can help, especially when time is limited in appointments. 
• Bring a pen and paper to the appointment to write down a few notes to capture the advice you are given, or next steps to consider so you can remember what you discussed and share with friends or family afterwards. Travelling to appointments and the worry about the outcome, along with brain-fog, can be stressful and tiring, making it hard to remember key points from the appointment.  
• Many people who live with PoTS may also have other health conditions – sharing your symptoms in the context of the other diagnoses is important so that health and care professionals see the full picture. One of the challenges with this is that you might have experienced some symptoms being ‘brushed off’ as being due to these other syndromes (particularly if they have multiple cross-over symptoms) – talking about this concern with your health and care professionals is important, as well as suggesting direct communication between different condition specialists you might be seeing. 

Forming your treatment plan and team is time consuming (it can indeed feel like a full-time job for a while). Patients who feel in control of their own care tend to have the best outcomes, so this is time well invested.