Llais – a stronger voice for Welsh patients
Llais is an independent statutory body established by the Welsh Government to give the people of Wales a stronger voice in their health and social care services. This includes those times when service-users and patients want to make a complaint.
Whilst they can’t give medical advice, Llais complaints advocates can take what you have told them to health service providers to ensure that your concerns are addressed.
Each health board region has its own team of qualified and experienced complaints advocates able to help you through this process. You can find yours here.
As well as helping you with complaints, as a statutory body, NHS organisations, local authorities and third sector care providers must listen to Llais by law.
Llais is particularly keen to hear about the healthcare-related experiences and needs of those living with lesser-known chronic ‘invisible’ conditions like endometriosis and adenomyosis so they can take any common themes to decision makers in health and government and ask them to consider what can be done to make improvements across Wales.
The following information has been created for Endometriosis Cymru by Llais and was last updated in March 2024. Be sure to check the Llais website for more content and the most up-to-date information.
Below, Llais outlines how the process of raising a concern works and include a short ‘frequently asked questions’ section addressing specific concerns you may have as someone with suspected or confirmed endometriosis.
Your Llais advocate
Your first meeting with us here at Llais will be with an advocate assigned to you based on where you live. When you describe the nature of your complaint and your preferences, this advocate might change to someone else who better suits your preferences, needs and situation. For example, you may prefer a male or female advocate.
Your Llais advocate will help you do as much as you can for yourself and support you to make your own decisions. They will always check you’re happy before they do anything for you.
Patients sometimes worry about other people thinking their symptoms are ‘normal’ or ‘in their heads‘. A fundamental principle of the professional training given to Llais complaints advocates is that they don’t make any judgement about you, the experiences you describe to them, or the merits of your complaint. They are there purely to help you raise your concerns and support you through that process.
Llais Complaints Advocates are trained to work with you at a pace that suits you, to give you the level of support and input you need during the complaints process. This may change as the process goes on. The working relationship you have with your advocate will also adapt as needed.
Whilst they cannot attend medical appointments, they can go with you to meetings about your complaint and talk on your behalf if this is your preference. They can attend meetings held online or in-person. Your advocate will always check you’re happy before they do anything for you.
Your meetings with Llais
Normally it will just be you and the advocate at the first meeting. Llais will let you know if anyone else needs to be there.
Meetings can happen face to face, over the phone or online. Our complaints advocates will try and make sure the meeting is in the safest, most convenient location for you.
It’s good to set aside one hour for the first meeting. But the length can be shorter or longer if that suits you better.
Some patients find talking about symptoms embarrassing. Llais advocates have had professional training and are experienced in dealing with very personal matters that might have had a significant impact on you physically and emotionally. When you meet your Llais advocate, you should feel that you can talk freely about the health or social care issues that have affected you.
At Llais, we won’t tell anyone else what you have said to us in our meetings without your permission. There are some exceptions to this when there is a safeguarding concern. For example, your Llais advocate must tell someone else if you share information about you or someone else breaking the law, or you or someone else being in danger. If we need to tell someone else, we will explain why.
Frequently asked questions
The following are common concerns of people with endometriosis when considering the complaints process, with responses from Llais.
Will my healthcare improve after I make a complaint? For instance, will I get the referrals I want?
Llais says: Every complaint is different, and clients will have various preferences about the outcomes they want. If, during your discussions with your complaints advocate, it is identified that something should have happened in your healthcare that didn’t, the complaints advocate can help to get this rectified.
I’m worried that making a complaint will lead to me being blacklisted or not being treated by doctors.
Llais says: Being fearful about future healthcare is something Llais hears a lot. There are systems in place to make sure this doesn’t happen.
I don’t have all my medical records. Does this matter?
Llais says: Your advocate will work with whatever information you have. Sometimes, it may be that they need to see your medical or care records to help you. With your permission, they can ask the NHS for any relevant paperwork or records it holds about you.
Your advocate will only look at information about you if you give them permission. They will ask you to sign a form to say you are happy for this to happen.
What if I find my medical records distressing or disagree with them?
Llais says: Our advocates are used to supporting people through what can be a distressing process, but they can also signpost you to more specialist mental health advocates if this is what you need or would like.
Sometimes, medical records can reveal other issues about which you might wish to complain. The Llais advocate can help you to make a complaint about those things too. It might also be that you are not happy with the way the NHS has handled your original complaint so Llais can help you with formally complaining about that process as well.
I want to make a complaint, but I’m uncertain of names and dates.
Llais says: Your advocate will find out as much as possible about who you saw and the dates at which you saw them.
The ‘Putting Things Right’ process in Wales allows 12 months to start a complaint from the time of the experience, or when you realised it had caused you a problem, although there can be exceptions.
Llais always recommends you come to us, no matter when your experience took place, so we can give you more information about timeframes for your situation.
I really struggle to get my point across in appointments
Llais says: Your advocate’s first job is to listen to you, and they understand that you may be stressed, anxious, and emotional about your experiences and about the possibility of making a complaint. Whilst they cannot attend medical appointments, our advocates can go with you to meetings about your complaint and can talk on your behalf if you prefer. They can attend meetings held online or in-person.
What happens if it all gets too much for me, or I get unwell?
Llais says: Where possible, Llais will make sure that you can pick things up later with the same advocate, so you don’t have to re-tell your story. There can sometimes be certain time limits to making a complaint, but your Llais advocate will let you know about these and support your decision-making.
I really need to see an endometriosis specialist, but I’ve been told I can’t because I’m not in the right health board.
Llais says: Our complaints advocates can support you to raise a concern about not getting the healthcare you need. If it turns out that this is a wider issue, causing inequity to lots of patients in a similar situation to you, they can bring these themes to the attention of the health boards and the government. The health boards have a legal duty to respond to issues that are brought to their attention by Llais.
Sometimes, as part of describing a general issue or theme, Llais might ask clients if they would like to share their story anonymously. This would be entirely your choice.
I’ve heard that my health board has an endometriosis nurse, but my GP says they don’t know anything about it. Is there anything Llais can do about this?
Llais says: Llais complaints advocates can raise a concern on your behalf if you are unable to access a particular health service you need. Llais is also able to act more generally, where they identify a problem with NHS processes. They can shine a light on wider problems such as systems being disjointed or poor communication between different NHS departments.
I work for the health board department about which I need to complain. What can I do and how can Llais help?
Llais says: We have experience of supporting people in this position. The ‘Putting Things Right’ principles apply equally to everyone and Llais advocates will ensure that you are fully supported to use that process in the same way as anyone else.