Communication Tips

Conversations about pressure ulcers

Practical tips for health care professionals and those who support people day to day.

Service users

Professional

Advocate

Tips for service users

Why does good communication matter?

Sometimes, people with long-term conditions find it hard to talk to health professionals about pressure ulcers. Some people feel guilty about getting a pressure ulcer or worry that they will be judged. Others have had bad experiences in the past. For example, not being taken seriously or struggling to get what they need. People also worry about the impact of pressure ulcer the treatment. For example, bedrest taking them away from their lives. All those things can make it harder to ask for help and be open with professionals.

"I think we’ve got to ask ourselves, do people feel comfortable saying, “I think I’ve got a pressure ulcer?” Do they feel comfortable having something reviewed that’s so personal? Are they scared that we will judge them?” - Health Professional

Preperation

Difficult coversations

During

Tips for carers and other advocates

Why does good communication matter?

Carers, PAs and other advocates (people who provide support) may also be part of pressure ulcer conversations. For example, helping people to find the right services or providing support during appointments. Many people value working in partnership with professionals and sharing decisions about their care. Good communication is a vital part of that. A group of people with long term conditions, health professionals, carers, personal assistants and researchers have worked together to write some communication tips. The tips focus on conversations about pressure ulcer risk, prevention and treatment. Click on the tips below to find out more:

Preperation

After

During

Tips for health professionals

Adapting your approach

Laying the foundations

Why does good communication matter?

Some health professionals also find pressure ulcer conversations difficult. Most are not pressure ulcer experts. Even if they know a lot about pressure ulcers, they may not understand what it’s like to live with a condition every day. Many professionals are aware that NHS services are complicated and that there is sometimes a limit to what they can provide.

Knowledge Gaps

Language

“We’re all in different departments, we’re all funded in different areas, and you’re told that your remit is to do this, and we’re not funded to do anything outside of this” - Health Care Professional

Understanding their perspective

Sharing decisions and plans

Through our work with people with Long Term Neurological Conditions they have told us that it can sometimes feel daunting talking to Health Care Professionals (e.g. GP, Nurse, Physio) about pressure ulcer risk or treatment. But not all Health Care Professionals know the details about pressure ulcers and how they can be prevented. Even if they know a lot about this, they will not have your expert understanding of how you manage your condition (or if a carer or a PA, how you help to support the service users) and the wider circumstances of your life. By working in partnership with Health Care Professionals, you can come up with solutions that work in managing a pressure ulcer or the risk of getting a pressure ulcer. Service users also report that they can sometimes find talking to their carers or PAs about their changing needs difficult. Likewise, PAs may find it awkward to raise this initially, but providing support at challenging times is really important. We encourage service users and PAs to try to be open to talking about and how you can work together to make changes (sometimes temporary), to support pressure ulcer prevention. The people we have worked with have suggested some tips for getting the most out of appointments with Health Care Professionals. There are things you can do before, during and at the end of the appointment: Before the appointment i What do I need? List of things to mention: You may want to set some time aside to think about what you want to get from the appointment. You could make a list of what you want to discuss. This can make you feel more organised and more prepared for the appointment if you feel you have a lot to discuss. Copy of your safe routine plan (if you have one): If you have a written safe routine plan (this is a written plan of the actions you routinely undertake to prevent you getting a pressure ulcer e.g. repositioning, using cushions), have this with you to share with the Health Care Professional. This is helpful because it sets out what matters to you in decisions about pressure ulcer prevention or treatment. It also describes your usual routines and the equipment (e.g. cushions and mattresses) you use. This is a good starting point for the Health Care Professional to understand your choices and what might help. If you are worried you have a pressure ulcer: Information about any recent changes in your life, in your risk or personal circumstances. Think back to when you first noticed it and the days/week or so before that and what was going on in your life. Think about any changes in your risk or personal circumstances [risk factor section]. For example, had you not been as active, due to illness or a change in your usual routine. Telling the Health Care Professional about this will help them understand what has been going on and what might help. Do I want to bring anyone with me to the meeting?: Think about whether it would be helpful to arrange for someone else to be there with you to support you such as a carer, family member, personal assistant, trusted friend. There are also forms of peer support you could access to prepare for the appointment e via condition related charities such as [e.g. SHINE, ASPIRE, SIA, Backup, MS Trust)]. If you are bringing someone with you, talk to them beforehand about how they can support you and what you need from them. Notice how you are feeling before the appointment: You might be feeling different emotions because of previous experiences such as frustration or anxiety as well as positive emotions. The Health Care Professional will want to help you. It is an opportunity to work as partners and get the most out of the appointment. Have a planned phrase ready that you can use to pause the appointment if it is not working for you: e.g. ‘I’m sorry I don’t understand what you mean’, or ‘no I don’t think that would work for me because….’. If you are bringing someone with you to the appointment they might be able to help with this. During the appointment i Right at the start of the appointment, ask how much time you have so you can focus on things that are most important for you. Let the Health Care Professional know if you need any help with understanding what is happening in the appointment and in getting your point across e.g. if you are hard of hearing or if you need a bit of time to take in/process the information they give you. Don’t be afraid to pause the discussion if you don’t understand something the Health Care Professional says. They can then explain it in a different way. They won’t mind you asking and this is important, so you have all the important information. At the end of the appointment i Check what the next steps will be e.g. if you need another appointment or any additional support. Ask for written information and take notes so you are clear on what actions you need to take afterwards. If there is someone there supporting you, they could take notes for you.

Before the appointment

Make a list: Think about what you want to get from the appointment. It might be helpful to make a list of things to discuss. Consider ICE (Ideas, Concerns and Expectations): Think about your Ideas, Concerns and Expectations (ICE).

• Ideas: What do you think is happening? E.g. I think I have a pressure ulcer
• Concerns: Is anything worrying you? E.g. I don’t want it to get worse and end up in hospital.
• Expectations: What do you want to get out of the appointment? E.g. I want someone to check the sore area and help me make a plan so that it doesn’t happen again.

Use this website: It may be helpful to take all or part of this guidance with you, to share with health professionals. For example, the ‘what puts you at risk of pressure ulcers’ section could help you to describe why you believe you are at a high risk. Your ‘safe routine’ plan could help you discuss your usual routine, equipment and what matters most to you. You could print out relevant sections or have them ready on your phone.

If you are worried you have a pressure ulcer: Make a note of any changes to your skin. Think back to when you first noticed the changes. What was happening in your life around that time? Think about any changes in your risks or routine. Support: Would you like to chat to someone before the appointment? Would you like someone at the appointment with you? For example, a carer, family member, personal assistant, friend or advocate. If you are bringing someone with you, talk to them about what you need. See our ‘support and advocacy’ tips for more ideas. How are you feeling? Notice how you are feeling before the appointment. It may be helpful to share how you are feeling with the health professional so that they can support you in the right way.

After the appointment

Check in with the person you are supporting:

• How do they feel? Did they understand everything?
• Did they get what they need?
• Are the next steps clear?
• You may want to chat through the pros and cons of different approaches, to help them make decisions about their care.

Take care: Supporting others can be challenging. Notice how you are feeling and take care of yourself.

Difficult conversations

Planned phrases: Have phrases ready that you can use if an appointment is not working for you. For example, ‘I’m sorry I don’t understand what you mean’, ‘I don’t think that would work for me because…’ ‘I’d like to discuss alternatives’. The SEWR technique: SEWR is a simple structure for getting your point across.

• S – State the facts: stick to what has happened
• E – Express your feelings: share the impact
• W – What you want: say what you would like to happen
• R – Reinforce the benefit: explain why it helps

This technique was developed by the Epilepsy Action and Vital, who have more information about communication on their websites. Use this website: You can tell health professionals that this is “evidenced based guidance”. For example, “According to this evidence based guidance, I am at a high risk of pressure ulcers.” Still unhappy?: Remember, you can ask for a second opinion. You can also contact PALS (the Patient Advice and Liaison Service), who can help to resolve problems in the NHS.

Language

Working together: Using ‘we’ rather than ‘I’ language can reinforce a partnership approach. Blame: DO NOT use language like ‘compliance’ or ‘concordance’. Some people find these terms offensive as they can imply blame. Find more positive phrases. For example:

• ‘can we talk about the difficulties of fitting prevention into your routine?’
• ‘It sounds like you have struggled to find time to take pressure off the area, shall we try and come up with a new plan together?’

Judgement: Avoid describing people’s actions as ‘poor’ or ‘bad’ e.g. ‘a bad transfer’ ‘poor diet’ or ‘poor posture’. Try and find less judgemental phrases. For example:

• ‘it sounds like you had a difficult transfer and caught your skin’
• ‘some small changes to your posture might help’

Knowledge Gaps

Acknowledge gaps in your expertise: If you lack experience of pressure ulcer prevention and/or someone’s underlying condition, then be honest. You don’t have to know a lot to take a good history, and this will really help your discussions other professionals. Seek help: Be clear about what the next steps will be. For example, who are you going to speak to? When will you get back to the patient? Will someone else be in touch? Does the patient need to do anything?

Understanding their perspective

Consider ICE (Ideas, Concerns and Expectations):

• Ideas: Ask people what they think led to their current situation.
• Concerns: Is anything worrying them?
• Expectations: What are they hoping to get from the appointment? Be honest if there are things you can’t provide.

Routines: Try to understand people’s lives and routines. Ask if there have been any changes to their normal routine that could have led to skin changes or a pressure ulcer. Ask if they have a written ‘safe routine’ or prevention plan that you can look at together. Support: Find out what support people have at home. Is there anyone they would like to be involved in their care or appointments? Discuss additional support that might be needed while treating the pressure ulcer. What matters to them: Find out what matters most in people’s lives e.g. work, family, caring responsibilities, wider self-care routines. Remember that people are often trying to balance pressure ulcer prevention / treatment with busy, complex lives and other health conditions.

During the appointment

Support during appointments: This may include:

• Taking notes
• Asking questions when things aren’t clear
• Adding information if something is missed
• Filling out forms
• Asking for specific equipment (e.g. pressure relieving mattresses in hospital)
• Helping someone to get their point across if they are not being heard
• Helping to explain someone’s normal routine and any changes

Find out more

• MOVES: Your safe routine to prevent pressure ulcers

During the appointment

Getting started: At the start of the appointment, check how much time you have, so that you can make sure you cover the things that are most important to you. Reasonable adjustments: Tell the health professional if you have any access or communication needs. For example, if you need extra time to process information or if you are hard of hearing. Pause if needed: Don’t be afraid to pause the discussion if you don’t understand something. Ask the health professional to explain it in a different way. Notes: Some people take notes to help them remember things. If there is someone with you, they could take notes. Endings: At the end of the appointment, check what will happen next. You can also ask for written information.

Preperation

Discuss what people need: Every relationship will be different. If someone asks you for support, talk to them about what they need. Advocates should only act when they have the permission of the person they are supporting. Seeking help: The NHS can be complicated. Advocates can help find the right services and make appointments.

Find out more

• Pressure ulcer services

Adapting your approach

Reasonable adjustments: Long-term neurological conditions can cause issues that affect people’s communication. Talk to people about what they need and adapt your approach. For example, people may have hearing problems; they may need longer to process information and get their point across; they may find it harder to remember things; they may be struggling with fatigue and concentration. Meet people where they are: People will be at different points in their patient journey. For example, if someone is newly diagnosed, they may be feeling overwhelmed by lots of new information and life changes. If someone has lived with a condition for a long time, they may feel more confident managing it. People will need information presenting in different ways. Assumptions: Don’t make assumptions about people’s pressure ulcer knowledge. Explore what they know about pressure ulcer development and prevention. Studies have shown that health professionals often think they have discussed prevention, but they may not have communicated it clearly.

Sharing decisions and plans

Prioritise: If you have limited time, try to understand what success would look like for the patient. Work on their priorities first. If you think something is clinically urgent and needs prioritising (e.g. a severe infection), then explain your reasoning. Demonstrate that you have heard their concerns and will come back to them. Use this website: If appropriate, work with people to plan safe routine to prevent pressure ulcers, using the template. You could also highlight other sections that might be relevant to their specific situation. Discuss treatments options together: Discuss the pros and cons of each option so they can make informed decisions. Disagreements: Sometimes, patients might make decisions that you don’t agree with. Discuss this gently and respectfully. Try and understand their reasoning. This may provide an opportunity to offer alternatives or adapt care to for their specific situation. For example, if someone is unable to do long periods of bedrest, they may be able to incorporate shorter periods in their daily routine.

Respect their decisions: If someone has capacity, they can make decisions that you don’t agree with. Document these conversations in your records. Avoid blame or judgement when talking to people and when writing notes.

Good communication skills

Good verbal and non-verbal communication can help people feel supported and build trust. Some of these tips may sound obvious, however people with long-term conditions have told us these things are important and can be forgotten. Introductions: Introduce yourself and give people your full attention. Let people know how much time you have together. Check your understanding of why they have come to see you. Listening: Actively listen to the information people provide, seek clarification where needed, summarise what you have taken from the conversation, so they know you have listened and understood, ask if you have missed anything. Endings: Summarise your discussions and actions. Let them know what the next steps are. For example, plans about equipment, extra support at home, if / when they will see you again, any referrals. Check they are happy with the plan.