In my case, the main issue for assessing the healthcare services is existing physical barriers. According to the statistics, about 50% of 340 public health care institutions in Lithuania are still inaccessible for wheelchair users like me, not to mention other types of disabilities. For example, my family doctor works on the second floor of the building without an elevator and it is very difficult to reach her when needed – most of the health counseling comes over the phone, especially during the times of COVID-19, but what quality of service is that?

I often face social challenges in healthcare settings as well. Unfortunately, many health care professionals still use the medical model when it comes to disability – the main aim for them is to ‘cure’ me and bring me as close to standard of a healthy individual as possible, instead of focusing on my personal well-being and quality of life. Less patronizing, more empathetic and human-based approach when it comes to persons with disabilities would be very much appreciated.

I am a Deafblind person and I had to attend a mammography examination. The nurse harshly pulled me in the dispensary and no one explained anything to me. I didn’t know what was going on and I was so scared that I started to cry.

Psychiatric hospitalization and treatment without consent make a person never want to see another doctor – any doctor – again. Coercion leads to fear, a loss of trust in care and compromises the prognosis. Coercion must be abolished in all health and social care settings and free and informed consent to all types of care or treatment must be the rule in our common interest.

My name is Diarmuid. I am from Ireland. I am waiting for a new kidney so I am on the kidney transplant list.
I have been in hospital many times in my life.  I need information in Easy to Read format to understand what is happening when I am in hospital or getting ready for surgery.  I have never had Easy to Read information in a hospital.
This means that somebody in my family, must be my advocate. My family are very helpful but the hospital do not always understand that I need someone with me and that I need support to understand information so I can make important decisions about my health. We need more advocates and accessible information in hospitals, without them being in hospital can be confusing.  I like having the power to make my own decisions.

I had injured my shoulder (a hairline fracture). I called from my own number the emergency center because I really needed help for my shoulder which was aching very badly. I had been with the pain for many hours when I had been constantly trying to achieve somebody (actually whoever in that aching situation) but I received ONLY automatically recorded messages in which it was said that you have to dial the number corresponding to the need. And that seemed to be the main problem – in their policy they decide and carry out actions based on the list of orders, not taking account of an individual patient’s needs. In the automatic messages they said that they (perhaps) could call me back during the SAME day – but there was NO answer call the same day (only a text message the following day which I missed). So I had to take care of my problem independently, by calling the insurance and going to a private hospital.

It is really hard to be a deafblind person at the doctor’s office, especially when they diagnose you and point out a specific health issue, but they don’t offer any concrete solutions. It is especially hard to be diagnosed with diabetes when you are a Deafblind person. Doctors just give you the list of foods you should and shouldn’t consume. They expect us to Google it and do our own researches online neglecting the fact that to a Deafblind person that is extremely hard without the adequate support, for some it is even impossible (like the Deafblind elderly that don’t own and/or don’t use technology). And what about the information on what is diabetes, how to live and cope with it, how to cook and prepare food (methods, recipes…)? Also, how are we supposed to find suitable groceries when the ingredients are written in such a small font, how to check sugar levels in the blood when you are unable to see and hear? It is a mission impossible for the Deafblind, and the health system in some countries offers little or no support whatsoever.

Usually the doctor talks to my deafblind interpreter, but I do not understand why since I am the patient. On one occasion, the doctor told to my female interpreter: “Take his clothes off and make him lay on the bed!” I was really embarrassed and I believe my deafblind interpreter was too.

The problems of access to healthcare services for persons with disabilities are numerous in France today. We are lagging far behind when it comes to the accessibility of doctors’ offices. Particularly in old buildings, work has not been undertaken to bring the buildings up to standard. The various laws and decrees since 2005 have largely contributed to this delay. There are many exemptions and the owners of the premises (health professionals are often tenants) refuse or delay the work.  Access to buildings is not the only obstacle: the equipment is rarely adapted to a good reception. For example, in gynaecology, the tables are not adapted for persons with physical disabilities, and there are very few radiology centres where it is possible to carry out a mammogram in a sitting position.

There is also a lot to be said concerning the attention given to persons with disabilities by health care providers. Most of the time, when you complain about something, but the doctor can’t figure out what it is, it’s easier for them to say “it’s due to your disability, your illness”. They don’t look any further. But you just have to listen to the person: if the patient says it’s not related to their disability, then it’s not! Often the patient knows more about their disability or illness than the doctor, and knows better than anyone else how to deal with their problems. Sometimes it is just by listening to us that better care can be provided.

Furthermore, when persons with disabilities come with a personal assistant, medical practitioners tend to forget about the person with disabilities and go directly to the assistant. It is true that it is often quicker to address the assistant. However, it is essential to take the person into account, to use simple language such as easy to read and understand (FALC in French), to put oneself in front of the person in order to better capture their attention and thus to be entirely focused on them, especially if they have a sensory and/or intellectual or psychosocial disability. It would therefore be essential to reinforce the training of medical and paramedical staff. Disability is very rarely addressed in the course of studies and often in an optional way. However, raising awareness very early on among future professionals, providing them with solutions, is essential for them to be able to take into account the difficulties encountered by persons with disabilities, to acquire knowledge and good interpersonal skills.