Pains, Perils, Deadlines, Policies, Frustrations, Telephones, Devils and Angels in the NHS by a totally deaf lipreader…..

Hello Blog. Long time no see. Apologies for leaving you in the dark, time to wake up and publish some news from me to you

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I am currently glued to a bed in my living room. I broke my kneecap about 2 weeks ago and have had an operation to screw it back together and to stitch the tendons back on. My leg needs to be kept straight, I am unable to walk far at the minute, it is excruciatingly painful.

I do not use the phone, and I lipread. I hear nothing at all, no aid to hear with can help me understand speech.

I have a lot of painkillers given when I was discharged from hospital, and am now in need of more. I cannot get to the surgery. The painkillers can make me drowsy, and in turn, it affects my lipreading skills.

While in hospital, I was never asked for communication support. Once everyone realised I didn’t use BSL, they seemed to assume I would “cope”. I did however spend time explaining to the nurses and staff how to communicate with me. I have seen some who tried to shout in my ear, some who looked around in panic, trying to find someone to relay to me what they are saying and some who simply assumed what I wanted / needed and didn’t communicate well at all. There were some staff who were brilliant, I could lipread them without any problems, but there were also many who had different accents, some who would speak with a “v” instead of a “w” and who would mouth their words so big it was embarrassing. There were also some who rattled off their words at 300wpm who were impossible to slow down, as if they were in a hurry all the time, and some who would simply walk away and not come back. But after some explanation we sort of hit a happy medium where we could at least communicate a bit better with some communication skills “training” from me.

I settled in over a couple of days in this ward before going for my operation. After being in the pre-op ward, as soon as I came out of theatre, all my stuff was unceremoniously dumped on my trolley bed and I was moved to another ward.

Confused, I then had to do the whole thing again, explain to the new staff how to communicate with me. I was still under the effects of an epidural at the time. It was un-nerving, after I had spent all that time the previous 2 days getting used to lipreading and communicating with the staff on the other ward.

Being stuck to a bed meant I had to rely 100% on the “emergency” button for every little thing, even if it was to go to the toilet or to get something out of reach. The pain was excruciating, even to move my leg. Most of the staff were fantastic, but some were pretty rude, they would come up to me and tell me not to press the button so much and who would say they had a lot of work to do and I wasn’t the only one in need. At one point I was kept waiting 2 hours for a request for more painkillers, I had been told by the surgeon in the operating theatre to make sure I never got to the point that the after pain was unbearable. This particular episode left me screaming in pain with tears running down my face, and yet I was made to feel I was “putting it on”!

This is why I asked to go home, I felt I could control my pain better and I have to praise the doctors on the ward for communicating so well and giving me the medication split up so I could mix and match to control my pain myself. The occupational therapist came to see me to help me get the equipment I needed to be able to go home, she was amazing, she got me all the basic stuff I needed within 3 hours of coming to see me. A commode on wheels, a bedpan for ladies (wonderful!), and some really helpful advice. The physiotherapist came too, and showed me how to get on and off the commode so I at least could be moved about downstairs. These two lovely ladies were really helpful. I was given a list of phone numbers to hire a wheelchair if I needed one, and she even took the trouble to go and find an email address I could use instead. They also arranged for the district nurse to come and change my dressing the day after I got home. 11741796_10153039948057776_1147985985_n11694408_10153039948012776_1351030608_n

I left less than 24 hours after the op, they didn’t arrange any transport home, it was such a challenge to squeeze myself into the car to get out of there, with a painful erect leg that couldn’t be moved. But we managed (just!). I was not asked if I needed a sick note, and was not asked if I needed any help in getting to the car. Of course I work, so I do need a sick note, it was like they assumed all deaf people don’t have a job!

On the way home, we bought a memory foam mattress to put on the single bed we have in the “man cave” (our shed) which we built up in the front room while I was sat on the wheelie commode. Best £85 I’ve ever spent! To date I have not been able to go upstairs, and only yesterday did I manage to get to the sink in the kitchen to brush my teeth properly. Brings home to you the difficulty people have when they have accidents like mine, and I have now got HUGE respect for all my friends who are using wheelchairs, some for life.

Day 2 at home, the district nurse came. Changed my dressing and told me she would go to my GP surgery and ask them for a sick note. I asked if she was coming back, she said no. I asked if there was any way in which I could be given a mobile SMS number to get a GP or someone out in case I needed it, she said no. She did, however give me her personal mobile number, which I have got, just in case of any really pressing emergency.

10 days later, I had an appt at the hospital to get the staples out, another x-ray and a meeting with the consultant. I had to ask for communication support, a lipspeaker was booked and hospital transport was booked to arrive at 7am. My lipspeaker was only available until 9.15am, the appointment with the consultant was at 8.30 am. We were all ready for the transport, we waited and waited. The transport was asked to allow my husband (who is also deaf) and our joint Hearing dog to be in the ambulance. However I do have a daughter who cannot be left alone (she has aspergers) – the ambulance people, firstly didn’t arrive until 8.30 am… and secondly told us they couldn’t accommodate my daughter, I needed someone with me in the ambulance for communication support, and we ended up taking the car, following behind the ambulance, because it was the “rules” that no-one else was allowed to travel with the patient.

In the meantime I was in constant contact with my lipspeaker, who was waiting at the hospital for my (very late) arrival. We got there about 8.50am, and there was a lot of confusion, my lipspeaker found us (she was waiting at the main entrance) and staff were told by us and our lipspeaker about the time deadline. The hospital was heaving. Staff had to rush around getting an X-ray, and getting everything ready to meet the consultant, we were pushing time all the time, finally getting into the waiting area for the consultant at 9.30 am – time, time, time, I desperately needed my lipspeaker to be able to follow the consultant so I could ask questions and really understand what had happened and get advice on how to deal with the injury.

I was so stressed, all the questions I had in my mind flew out of the window, all I could think about was my need to speak to the consultant and my lipspeaker’s need to get to her next assignment, which was a good hour’s drive away and at 10.30 am.

In the meantime, staff and patients and the general public in the waiting room were all coming up and asking if they could say “hello” to our hearing dog, some petting him without asking, and distracting him from working and trying to engage in conversation with a very, very stressed Suzie.

Finally, at 9.45am I was moved into the treatment room to have the staples removed so the consultant could see.


I didn’t even have time to think about how painful or what this procedure was going to be, all I was doing mentally was going “hurry up” – get this done so I could see the consultant and looking at my lipspeaker, who was at the point of going “I really have to go, 5 minutes and we are going to have to give up, you’re going to have to manage without support….. .”

Then my lipspeaker went “oh well, I’m late already, might as well wait for the consultant…” and I was going “oh – please do give my sincere apologies to your next client, I can’t do anything…..” About 9.55, the consultant came in, we had about 5 minutes of a chat, and some advice. As soon as it was finished, (with still a bucketload of questions that never got asked properly, but at least the basics were put into place, I won’t do any more damage by putting a little bit of pressure on my leg, and I must keep it straight, I think – I have a hazy memory of it all, to be honest. You don’t take communication in very well when stressed!). My lipspeaker then had to go.

But the next stage was to go to the Occupational therapist to get a brace. She was brilliant, she too, gave me her email address (yes you guessed it, if you want advice or support you are given yet another phone number!).

Getting back home, we went to Hospital Transport, and again I asked if my husband, daughter and Hearing dog could travel with me. No they say, it’s “policy”. Someone needs to explain to the people who devise these policies that if they want patients to help them help themselves, they either allow a relative / or family in the transport or they can book communication support for the deaf person from the very point of contact (home) to the very end of contact (home), or they can train their staff in basic communication skills, and this means they know the difference between a deaf lipreader and a deaf signer and how to deal.

Talking to the staff on the transport, it was clear, even they thought deaf people signed. I was told how clever I was to lipread and how well I spoke, yet again evidence people do not understand deafness.

I never thought of myself as being as bad as some of my peers who complain loudly about lack of communication support in the NHS, I have to now say confidently, I agree, and for those who do not use a sign language, the need is just as great.

Knowing and seeing for myself the range of different accents in the hospitals, even someone with a hearing aid or cochlear implant will have problems understanding these staff (I’m talking communication here, not lack of commitment, the staff I met on my travels were, in the main, so nice, supportive and tried their best to be as helpful as possible, once they understood the issues. There are many unseen angels in the NHS, they deserve our thanks and respect for what they do in a highly stressful, time pushed job).

So here I am, on my bed in the living room, typing up this blog of my experience. It had to be done. I’m running out now, of painkillers, I need to get some more. I also need my sick note, to all means and purposes it is still sitting on a desk in my GP surgery (despite me asking the district nurse to ask them to post to me, and despite me sending 2 emails to the practise manager asking for her to post to me).

I’ve tried to get into the patient access to get a repeat prescription, the facility to order online was not there. So this morning I fired off another email (the 4th) to the practise manager, asking for help. She responded within 10 minutes. The email wasn’t very nice to be honest, it was like I was being told off for talking about medication and needs, and I should have used a different email address to contact the surgery because she had been on annual leave and that was why my email wasn’t picked up, her email “isn’t monitored” when she is off on holiday. I’m sorry, but I have been asking for a sms number, or a better way to contact the surgery for the last 5 years, I asked the district nurse for one, and I continue to ask for one. It makes sense.

The systems are disabled by me. I’m not disabled by them to be honest, disability is when you hit a brick wall of inaccessibility. You can’t put a round peg in a square hole. People come in all shapes and sizes and requirements, there are technological solutions out there, yet society continues to use the “easiest way” for the majority without thinking about the need to get access for of ALL. There’s no excuse. The solution is in front of you, so why is it so hard?

Throw me the Data Protection act, and I will give you many different ways you can keep to the Law, yet give you an access solution as well. In fact some will say I should have got someone else to ring for me, a neighbour or a friend. Sorry – I’ll be giving them information about myself that I may not want to give. It is a breach of my personal security and privacy, and therefore that notion is a breach of the Data Protection act and my personal Human Rights to privacy.

Anyway, back to the events of this morning. The Patient access website was only to book a GP appt, which was no good for me because I can’t get to the surgery in the first place! The email from the practise manager had given me the instructions to get my prescription.

In the fog of my morphined up haze I forget that I needed to go to the actual surgery website, not direct to the patient appointment booking system. At least she gave me the link to it (but it was wrongly spelt and I had to go back to google to find the proper link….) I didn’t bother telling her this, it wasn’t worth it. I had to register as a new patient on the surgery website in order to get into it, this involved me having to put a “fake” 1234567890 telephone number in as I couldn’t register without inserting a “necessary field”. I thought I had already done it all by registering with the patient access web service….. And because I was “new patient” when I registered this morning, I was only able to get a choice of, wait for it… going to the surgery to pick up my prescription… and to make things worse, I got an email confirmation from the system giving me… another telephone number to ring if I had any queries about the repeat prescription I had just ordered.

Being polite, I have just forwarded that email, to the email the practise manager had given me, asking if they can possibly deliver the goods to my house please?.

I’m not sure if I used the word please… I apologise if I did not. But I’m not impolite, I’m a nice lady. I will go out of my way to help anyone who needs help, but when I’m faced with these obstacles myself, I have to be honest, I lose my patience too, and sometimes wonder if I should just emigrate to the Outer Hebrides, with all my friends who are deaf, BSL users, deafened or deafblind and we, ourselves can sort out all the systems we need in order to live a happy life without barriers.

It would be good though, if perhaps sometime, someone out there will read this blog and compare it to the dreams and aspirations of the report by NHS England, in the hope that things will improve

. NHS England report pic

I’m tired now. I have to get myself walking before 18 September, looking forward to going to the National Diversity Awards, I’ve been shortlisted for Positive Role Model. Very humbled and surprised to be invited to such an event. I thank everyone who took the time to nominate and endorse me. By then, all this will hopefully be a distant memory, and I hope that those of you who read this little story of mine will sit back and start thinking about access, about systems, about what everyone needs to be a member of this society we live in. After all, we are only here once

Suzie Jones

Shortlisted nominee National Diversity Awards 2015, (NDA shortlist)

Deafcomm (My website)

Founder of “Pardon I’m deaf, when will you listen we need access for all”. (Facebook page to Pardon Group)

Teacher and trainer, “In Good Hands” Deafblind project (In Good Hands)

Co-ordinator of Chorley and South Ribble Disability forum, (Disability Equality (nw))

About Suzie

Mother, Wife, Teacher, Cook and Hearing dog owner. Passionate about Equality for deaf and deafblind people. Believes in communication for all and breaking down these barriers, real and perceived. Deafened.
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