Podcast Episode 44: Supervised self-management in chronic oedema

Hello, my name is Natalie Phillips, and I am Clinical Manager at Hadnum Healthcare, who are a company specialising in products for the management of lymphoedema, lipoedema and wound care. I've been part of the team at Hadnum since 2012 and have worked in healthcare for nearly 30 years, being a clinical nurse specialist in the management of lymphoedema and chronic oedema for the past 15 years. Part of my role at Hadnham is overseeing all aspects of training, some writing for publications and clinical support, as well as clinical support on the road visiting clinics around the country. I'm an independent lymphoedema nurse specialist within my own clinic and a senior member of the teaching team at the Lymphoedema Training Academy, where we also train clinicians in all aspects of managing lymphoedema. I've been involved with the leg club as part of industry since joining Haddenham and have witnessed the great work that the foundation does in really helping members to become experts in their own care. Today I wanted to take some time to discuss what supervised self-management is and why it is important in the long-term management of lower leg conditions, especially in relation to chronic edema and lymphedema as this is my specialty. Self-management is not a new concept and has been referenced in the clinical articles from people such as Jane Wigg back in 2009. It is something that I as a clinician value as one of the most important aspects of care when working with members with lower limb conditions and lymphedema. The concept encompasses what we term as patient-centred care but also gives you the autonomy and most importantly the skills to manage your condition yourself, but with access to your nurse or clinician when required. It turns the relationship between you and your clinician into that of a team one where you should have regular discussions to work out a plan that works for everyone involved in your care and with regular discussion will enable you to modify your self-care when needed. Obviously there are always topics around the amount of time and resources available within the clinical setting so open discussions on what treatment strategies are appropriate, what products are suggested and the availability of these products on prescription will often form the basis of any plan of care. However, consideration must always be given to how you live your life on a daily basis, what commitments you have and how you will be able to actively participate in your self-management. One of the first things to discuss with your clinician is how your condition affects you and your quality of life and to tell them what is important to you. By doing this you will soon realise what the goals for your treatment are, whether that being fitting into nicer clothes and not always having to hide your legs or wearing nicer shoes that are not two sizes too big because of how swollen your feet are. By setting clear goals it gives you a purpose that will underpin your self-management. There are many ways in which a person can manage their swelling but one part that is really important is that you firstly understand as much as possible why you have the swelling as this will help you to understand why we suggest certain management strategies. Chronic edema or lymphedema can have different underlying causes. In the lower limbs on many occasions it can be related to problems with the veins which cause the ankles to swell or may cause a wound. You may have swelling as a result of not moving around enough or sitting for long periods or sleeping in a chair with your legs down. It can also be caused when a person is carrying a lot of weight and may be seen as having obesity related swelling. Regardless of the cause, all these factors can cause your lymphatic system to not work properly in that it does not remove the fluid and waste products from the tissues and take them back into your deeper circulation. It's important to note that the lymphatic system is a passive system unlike your arteries which have a pump the heart which helps to force blood through them the lymphatic system will only move fluid through it in response to movement or changes in the pressure on the tissues. This is why we will often mention the importance of exercises. Now you may be sat there at this moment thinking, oh here she goes and about to switch off, but do bear with me. The key here is that whilst exercise and movement is an important part of self-management, I'm not suggesting you sign up to a gym membership or run a marathon. What I'm referring to is you finding something that gets you moving just a little bit more, that is tailored to your individual ability and needs and most of all that you will be able to incorporate it into your daily life and enjoy it. Exercise of any form is important to help both your veins and lymphatic system work properly. Having a discussion with your clinician will help you decide what is best for you to do in this instance and they can help guide you to what is appropriate. Also there's a mountain of information on the Leg Club website where even Mr. Motivator has offered to support us all with moving just that little bit more. There's information on the British Lymphology Society website on their campaign that's called Everybody Can which gives guidance and tips on gentle exercises and also the Leg Matters website which also has lots of information because we can all do just a little bit more to keep our legs healthy. Another aspect of care is performing daily skincare. This quite often goes hand in hand with the type of compression therapy you may have been given. Whether you are in bandages or in a garment, we advise on skincare because the skin is the largest organ of the body which not only helps with regulating our body temperature but protects us from things that could damage us. If we have swelling then this can cause the skin to become dry and cracked and if it's not clean and is dry and cracked then this will allow bacteria or bugs to get in and cause infections such as cellulitis and cellulitis can cause the legs to swell more and further damage your lymphatic system as well as making you feel really unwell. One of the discussions I have with my patients often is around skincare and how wearing compression can impact this. Often patients report that if they are in a bandage which has only changed once per week they cannot perform skincare or even have a shower. I always advise that if bandages are needed then there are products that will cover the bandages and allow for showering or if the patient is able to self-manage using an adjustable compression wrap instead of a bandage to reduce any oedema then this can be removed daily for skin care and reapplied. It can also be tightened as oedema reduces whereas a bandage that is left in place may slip. Other discussions I have with patients often include what type of skincare product to use. This is often determined by the condition of the skin but at times some of my patients have been reluctant to use the cream or lotion that is prescribed because they find it greasy or too medical. Again having this discussion with your clinician may enable you to both agree on a product that is better suited to you or that you are happy to use. When we advise you to have compression garments or bandages it is because they not only support the veins to function properly but also help to support your lymphatic system to move fluid out of the tissues and reduce swelling. They reduce the risk of wounds reoccurring as well once healed and reduce the risk of cellulitis. There are many types of compression that can be used and it's important to discuss with your clinician what you feel will work best for you. As I mentioned adjustable wraps are a good alternative to bandages but there are options for different compression garments as well so when discussing this in clinic with my patients we often chat about what that patient does each day. For example I had gentleman that liked to exercise and go running but found his compression restrictive when exercising. So we looked at options and got him some different compression for when he exercises that is different to what he wears on a day-to-day basis. I also met with a gentleman who struggled to wear thigh length compression garments to his oedema sat in his thighs as well as his lower legs so we came up with the plan that he would wear below knee compression when out on his mobility scooter but when home would apply his adjustable compression thigh wraps. This enabled him to have the best of both worlds and ensure that his oedema was managed properly. As well as the different compression garments and wraps there is the option to have different colours, styles and patterns which would suit you for different occasions so you don't always have to have the same garment all of the time. There are also options that make it easier to get on and there are many different aids and applicators that can also help to support you manage with your compression. So again having that discussion looking at the different options available will help you manage better. I believe that these discussions are paramount for helping you to self-manage and find what works for you. Supervised self-management should be just that. If you experience a problem or are not sure of something then chatting through this with your clinician can help you modify your care without your condition deteriorating. I believe that by having two-way communication, by you sharing your knowledge and experience of your condition with us and by us sharing our knowledge and skills with you that we can all become experts in managing lower limb conditions. There are many other tools that can be used in self-management that have not been mentioned today and you may come across things that your clinician has not mentioned. My advice would be always bring it to your appointment to discuss and explore. Do be sure to have a look through the Leg Club website though as it has a wealth of information available to you. Thank you for listening to this podcast.