I wondered what the trickling sound was to my left as I sat in the waiting room at Leicester General Hospital. I asked Mary whether it was the toilet,
“No”, she replied, “it’s a fish tank but there are no fish in it. The sign on the tank says the fish are in isolation.”
I was in reception waiting to undergo a medical procedure. Forms had been filled in and handed to the receptionist 20 minutes earlier. It was Monday 20th July. It wasn’t that long ago, in fact last week Thursday 16th July when I got a call asking me whether I could come in for the procedure on the following Monday 20th July 2020. I got the call when I was working, quite unexpectedly, so I checked whether Mary was available to take me to the hospital and support me and agreed to come in for the appointment.
The member of staff (presumably from the booking office) who phoned me, informed me that I was going to get a letter in the post with some information about what I had to do in order to prepare for the medical investigation. Perhaps it was the fact that I was busy when I got the call, or maybe it was because I knew it was unlikely to arrive in time, it slipped my mind to ask to have the information sent to me by email in my preferred format (as a MS Word file). The last time I asked for information to be sent to me in an accessible format by the hospital was 4 years ago. Back then it took 6 weeks for the letter to arrive by email, and this was after a lot of confusion on the part of staff at the hospital in respect of explaining to them the format of the letter I required. Assumptions are made that I need the information in Braille. While, in actual fact a word document costs nothing and my assistive technology can read the documents out loud to me.
I had hoped that someone at the hospital from my previous contacts with them had recorded the fact that I needed the information in my preferred format (electronically) as should have been the case and that this time they would automatically send through my letter in that format.
In fact, on this particular occasion I had even spoken to the consultant (in my pre-consultation appointment with him) only a week prior to the phone call from the booking Department. I had explained to him that I was blind and therefore struggled to see if there were any serious physical changes of the nature he was asking. He sent a letter to the GP explaining that he agreed that I needed this procedure given that I was in his words “colour blind”. Now, technically that is true, I am colour blind. But, the fact that I am blind should have existed in my medical notes and flagged up on the hospital’s Patient Information System.
Meanwhile, back at the reception, a nurse popped out of the ward and shouted out a name of a patient. “David Jones…is there a David Jones?” (Not real name). After she received no response, she goes back in to the ward. The ward Sister then came out and shouted out the same name. Again, no response. She then asked reception who booked David in. I couldn’t hear what was said. However, she then spotted and approached an elderly hard of hearing gentleman sat in reception opposite us. She asked him twice,
“Are you David Jones?”
The elderly man eventually replied that indeed he was the patient they were trying to track down. There were not that many patients waiting in reception and Mary had already worked out that the elderly frail man was most likely the patient they were after. There seemed to be a distinct lack of initiative on the part of staff. I also got the impression that staff didn’t have all the information they needed about this guy. If they had been told that he was hard of hearing then they would have saved themselves 10 minutes of shouting and running around like headless chickens. Exactly the reason why the Accessible Information Standard was designed to address.
Shortly after this debacle my name was called out and the Ward Sister, let’s call her Charlie, took us through to an office. This is how the conversation went:
“Hello my name is Charlie and I am the ward sister.”
She then moved some papers around and said,
“Oh no not all of them!”
I had no idea what was going on and Mary explained to me that all Charlie’s papers had been stapled together incorrectly. She then went to find a stapler. When she came back in she told us that she felt really hot,
“Do you feel hot? I do.”
I said that I actually felt cold as I hadn’t eaten for almost 20 hours. She switched the air con on anyway. Well, I guess I am only the patient right?
Charlie took my blood pressure and pulse.
“You’re a runner aren’t you? Your pulse is very low and I only find that in people who run or do lots of sports.”
Oh, I like you Charlie right now. She then proceeded to ask another series of routine questions. Although many of these were directed at Mary. I made the comment that I hadn’t had the information in a format that I needed and even though Mary had read the information to me this was only a couple of days prior to the appointment. Charlie agreed that sending the information electronically was much better for everyone and the hospital was working towards this. However, as I was the first patients on the list we must press on with getting the paperwork completed.
Not to be easily put off I mentioned the hard of hearing gentleman and asked whether patients were asked whether they had a disability before coming to the hospital. Charlie replied by saying that the hospital were reliant upon patients to let them know in advance of the appointment. I pointed out that I had visited the hospital as a patient a number of times over the last few years and informed various clinics that I was blind but had never received information in my preferred format.
Charlie then asked Mary her full name as my next of kin.
“Oh, you have an Irish surname.” She commented.
Mary often gets compliments or positive comments regarding her Irish surname – and quite rightly so. I can’t recall ever getting a compliment about my name or someone complimenting me by saying “Oh what a nice Arabic sounding name you have.”
Once all the paperwork was completed we got escorted to the changing room. Mary noticed the plaster had come off the wall in one part of the room. It didn’t feel particularly clean either.
I undressed and, just as I got my gown on the door suddenly swung open. A rather surprised member of staff stumbled in saying,
“Oh sorry, sorry…I need some stickers.”
I was a bit confused to start off with. I wondered what stickers she was after. Unperturbed she carried on into the room and towards a cupboard where she rifled through its contents and found, I assume from her sigh of satisfaction, the stickers she was after.
I had undressed and was in my gown but left my socks on. Mary noticed that I was wearing odd socks. Note to self to get Mary to check what I am wearing before I leave the house.
5 minutes later a nurse came to get me and Mary was asked to wait in reception. Mary asked the staff to let her know as soon as I was out in order that she could assist me. It was really assuring to know that Mary was there to look out for me and providing me with moral support.
I was taken to another room where I was asked to lie on the bed. My blood pressure was taken and a clip put on to my finger. My temperature was taken and the procedure explained to me. I was offered gas and air to help with the pain of the procedure. The staff were brilliant to be honest. Initially I thought I may not need it but as soon as the investigation started I decided to take the gas and air tube and put it in my mouth. At first as the discomfort and pain kicked in the gas and air didn’t seem to work. At one point the medic told me to relax by tapping my toes,
“Your very tense, try to relax.”
I took bigger and bigger swigs of air, breathing deeper and deeper. I felt as though I was floating and my brain seemed to separate from my body. The medic said,
“That’s better your beginning to relax.”
I was indeed. This was wonderful stuff! I was aware of the questions I was being asked by staff. Who were constantly asking me if I was OK. I was feeling great. I was aware of the pain every now and again but I was beginning to forget where I was. I was getting more disengaged with the real world. My breathing got slower and slower as I took deeper breaths. I took one deep breath at one stage and thought that I had better breathe out. It got to a point when I did actually wonder how far I could take this. I thought that if I don’t breathe out I might actually end up departing from planet earth altogether. It was a strange feeling but I wasn’t panicking at all. In the back of my mind I thought that dying was probably a bad idea as Mary and Ayeisha wouldn’t be too pleased if that happened. I don’t really think I was in any danger. I’m sure that the medical staff had it all under control.
From this point I sort of seemed to slowly come back down to earth. I heard some alarms going off in the background but don’t know if I was imagining this. The effect of the gas and air made me feel like I didn’t have a care in the world. I was then asked to lie on my back which I did. The gas and air was momentarily taken off me. As soon as I got on to my back I said to the nurse,
“Can I have the gas and air back please.”
I actually remember saying,
“Boy this is good stuff.”
The medic doing the investigation laughed and agreed it was. I wondered if he’d sampled a bit of the gas and air. Probably not – completely professional I’m sure. I’m surprised that people aren’t selling G&A on street corners. I can see why it is administered during child birth.
Once the procedure was over I got carted over to recovery. The bed twisted this way and that. I heard the poor woman pushing the bed huffing and puffing. When we got to the recovery ward I heard another nurse saying,
“You can put him here. It is a man isn’t it?”
I didn’t have the energy to say,
“Yes, I certainly was the last time I checked.”
I was asked whether I wanted a cup of tea and biscuits. I really didn’t feel like it but thought I had better try to eat and drink something. The member of staff with me told me that her name was Norma and to let her know if I wanted anything. When the tea and biscuits arrived, I didn’t realise they were in front of me. Norma told me to have a drink and something to eat. I said that I was blind and had no idea it was in front of me. She apologised immediately and said that no one had told her. She then very kindly opened the packet of biscuits and gave me my drink. She also said that if I needed her just to call her name and she would come.
Once I had finished eating and drinking I asked a nurse (who I thought was Norma) if I could get discharged. She told me that she wasn’t Norma and worked on another team but would fetch someone for me. Norma had gone…where was my Norma?
I heard the nurse that was asked to attend to me say,
“Where has she gone? Why do I have to do everything?”
She didn’t sound angry but more exasperated. My blood pressure and heart rate was checked. My blood pressure was too low so I was encouraged to drink some water.
Sister Charlie then brought Mary to me. I was very pleased to hear her reassuring voice (Mary’s not Charlie’s). I couldn’t wait to go home. My blood pressure was checked again and it was higher this time.
The nurse then gave Mary some papers and started to explain to Mary what the investigation had discovered and what was to happen next. She started off by saying something like,
“He has had his investigation carried out and biopsies taken. He will get the results back in 6 – 10 weeks’ time.”
I must admit I really detest it when people start to talk to Mary instead of me as though I am a child. What often is described as the “Does he take sugar” mentality. I didn’t make a fuss of it as I know the nurse wasn’t being deliberately ignorant.
However, I think there is something undignified and dehumanising about being talked about as though you are not there. Why couldn’t she explain what was on the paperwork to me directly? I was appalled.
Most of the staff I came in to contact with were hard working, kind and compassionate people working under difficult conditions. It was interesting to me that out of the 6 or so staff I met that day only two introduced themselves to me by their names. Yet, my real concern is that throughout my experience at no point was I ever asked what my needs were as a totally blind patient. There was nowhere on the forms to express this, nowhere on the system to record this and no process for passing on the information from one staff member to another. The Accessible Information Standard has been in place since 2015 and from July 2016 it was a mandatory requirement to implement it to ensure that all Trusts either had an electronic or manual system to:
- Ask a disabled person what their information or communication needs are.
- Record what that need is either electronically or manually.
- Flag the need on the system so that when the patient uses the service again they don’t have to repeat what that need is. The system should flag the fact the patient has a need on their next visit.
- Share the information and communication need with other services if the patient is being referred on.
- Meet the need by providing accessible information and communication in the patient’s preferred format.
I’d like to say that this is the first time I’ve been let down by the health service. Sadly not. I’ve asked for accessible information in the past and never received it or it arrived weeks after my treatment. On the last occasion the GP who referred me to the skin clinic asked for a letter to be sent to me in Braille even though I don’t read Braille and that was not my preferred format. Yes, at least they tried. This is true. However, this is a little bit like sending someone whose first language is English a letter in French. If you can’t read French then you are stuffed.
We have undeniably one of the best health care systems in the world and I am proud of it. However, I really want NHS organisations to start taking the needs of disabled people with information and communication needs more seriously. I worked for Leicester hospitals so I know the challenges. I also know that they choose not to prioritise accessible information. I know because I tried really hard when I was there to get the leadership to listen and invest in this much needed area. Not least of all because they are, like many Trusts, non-compliant. They have been non-compliant since 2016 and no one is doing anything about it.
I am very worried about going in to hospital when I am old and frail. One day when I am very ill in a hospital bed I am concerned that vital information about my needs are not going to be passed on. Maybe I won’t be able to speak up and I will be so incapacitated that I won’t be able to ask where my drink or food is. Or, that I want help to use the toilet. I am worried that I will be forgotten because information isn’t passed on. It isn’t hard. Accessible information doesn’t always cost very much. Providing much needed training and awareness does require investment and time. However, I think I and many other disabled people are worth that investment and time.
More information about the Accessible Information Standard can be found from the following link:
https://www.england.nhs.uk/ourwork/accessibleinfo/
