We share advice and information to help people with a visible difference access support and services during the COVID-19 pandemic.
Many people with a visible difference have had their medical care or treatments put on hold or cancelled during the coronavirus (COVID-19) pandemic – this can feel difficult and stressful.
On this page, we look at the different feelings you may be experiencing about hospital appointments, and the practical steps you can take to ensure you have some control over your treatment.
COVID-19 has created challenging times for many. Due to the pressure on hospitals and healthcare services to focus on those ill with COVID-19, and handling staff shortages due to isolation, many people with a visible difference or disfigurement have felt the impact of this, physically and emotionally, as their medical treatment may have been shortened, delayed, cancelled or rescheduled.
For example, routine operations may have been stopped until further notice, physiotherapy and other rehabilitative sessions may be more difficult to deliver online, or staff in speciality services such as ENT, dermatology or orthopaedics departments may have been redeployed.
Many people with a visible difference have reported to us that they feel ‘less important’ in the scheme of things, particularly in relation to so many people being severely ill with COVID-19 The growth of waiting lists may also produce feelings of being less important in comparison to other areas of health and wellbeing.
You may feel guilty or uncomfortable worrying about having your own healthcare needs met. However, we want to reassure you that this is understandably worrying and upsetting, especially as it may not be clear when an appointment or support will become available in the future.
There has been a real sense of worry about not getting access to the usual services and having medical needs met. Although it’s understood that these are unprecedented times, a year or more later, people are still uncertain about when they will receive much-needed treatment or support.
You may feel anxious about receiving “official letters” from the hospital, worrying that this will mean another appointment has been cancelled or surgery pushed back.
Generally, hospital appointments or treatments can be difficult, stressful or overwhelming – you may feel you need to prepare yourself mentally and physically in advance. It can be frustrating and upsetting to then find an appointment has been changed.
Get in touch with your healthcare professionals
Don’t feel scared or worried to get in touch with the relevant medical team or healthcare professional and ask what the situation is regarding your treatment or care. It is fine to ask questions and get information to help you feel more in control of a difficult situation.
Prepare in advance
Try writing questions or thoughts down beforehand. Talk it through with a family member or friend to think about what you might like to say.
Have someone with you
When you go to an appointment or have a conversation, it can be really useful to have someone with you to take notes or ask questions. It can sometimes be hard to take everything in yourself if you are feeling worried, anxious or overwhelmed.
Note key names and contact details
Make a note of key people’s names and contact numbers, for example, the medical secretary, a specialist nurse or any healthcare professional you see regularly and have a good relationship with. They can help smooth the way if you are experiencing problems or worries
Lots of them and try not to feel scared. Healthcare professionals are there to support you and will be able to give you answers based on current research and their clinical knowledge and experiences. Be honest if you do not understand anything.
Take your time
It is fine to give time and consideration to any decisions regarding surgery or medication. Unless it is an emergency, you have time to reflect on any pros or cons and what you want or need specifically. Ask for a second opinion if you and your family feel that would be useful.
Speak to the PALS team
If things are not quite going to plan, you may wish to enlist help and support via the hospital patient advice and liaison services team (PALS). Each hospital has a team who can help liaise with your healthcare professionals and advocate on your behalf if you feel things have become tricky.
Say who you want to be at appointments
If you feel overwhelmed by how many people are in attendance at some of your appointments, you could ask your team to reduce this to a number you feel comfortable with.
Ask about transition
If you are a young person aged 15 to 17 years, you may want to talk to your healthcare professional or team about transition. They will be able to discuss what is available to you when you turn 16 (or 18 in some cases) and move on to adult services. Many hospitals have transition clinics where you can meet some of the new healthcare professionals you will be transferred to at a later date.
Remember this is about you – you should feel suitably informed about all aspects of your healthcare and feel part of any decision making.