"Hospital failure to comply with Disability Discrimination Act"

I have spent 2 years at home shielding as I am a double transplant patient with other chronic illnesses & mobility problems. I am also deaf, wear hearing aids & have always tried to cope on my own without help mostly succeeding. Covid has meant face masks, muffled voices & no lip reading. Last year I had an emergency appointment for possible bladder &/or kidney cancer & started on the various investigations. I knew that I would be highly stressed in hospital  so I emailed PALS repeatedly to ask what help I could have or for someone to contact. Instead I was directed to the learning disability officers...

I then had an emergency admission for sepsis. The first few days were difficult as staff refused to make reasonable adjustments for my deafness. I was told off for missing breakfast because I must have misunderstood and should have known. I was told off for asking for a written menu because I couldn't hear menu items listed verbally. I asked for my bed to be labelled with the deaf sign in accordance with the legal NHS Accessible Information standard, 2016, which ensures that all communication needs due to disability are met, this was refused because it was demeaning and would make me vulnerable. I did feed all these problems back to the hospital and got an apology.

Next I had a kidney biopsy. My previous one had been painful as the anesthesia did not work.  I was very nervous of being on a ward close to others after so long isolating. The hospital had forgotten to book my pre op pcr test so I did not even know if the procedure would still go ahead.  I had a wasted journey for the non-existent covid test.  I was not tested for covid until after being admitted to the ward. My husband had to translate most of the pre-op clerking in questions because I could not understand the nurse. Another nurse kept drawing back the cubicle curtains because he wanted to plug in his computer station and I repeatedly explained to him that I needed them drawn in order to feel calmer.

The biopsy went ok but afterwards I had to remain flat in bed on the ward for 4 hours to prevent hemorrhaging. During this time my husband was made to sit outside the open ward entrance despite helping me communicate and being my carer. I then looked at my day notes and discovered that there was nothing about my deafness in them despite the proactive emails, my previous hospital stay, complaint and my husband and I verbally explaining to the nurses. Also the deaf sticker that is supposed to be on the notes was missing. When I tried to explain to the nurse what was missing, I was told that deafness was nothing to do with her or the hospital but it was for my GP to deal with.  They then moved further away so that I could no longer hear her and refused to discuss this any further.

I eventually managed to remove my blood pressure cuff despite only partial use and strength of that arm, in an attempt to engage her in further conversation as I knew she would have to explain why she had had done the BP readings every 15 minutes. Instead another nurse came, who was obviously cross with me but I could not understand what she was saying from that distance. I repeatedly begged her to allow my husband back in as I needed his help communicating due to being deaf. This was denied.

Unbeknown to me my husband had offered to help but was told to go away and security was called. Finally another nurse realised that I might be upset and let my husband in.  He manage to calm me down, panic attack reduced when the guards arrived, not wearing masks despite my CEV covid status and anxieties, ripped back the cubicle curtains, stood next to me before leaving. I was terrified, trapped in a corner by staff and guards and not knowing what was going on, there was no way to escape so another panic attack.

Since then I need sedating for my hospital appointments and before my kidney cancer surgery. My husband has to remain with me for all my appointments.  I will not visit anywhere on my own without him, cancel appointments that I think I can etc. I panic at the prospect of dealing with any stranger even on the phone and now refuse to answer it when it rings.  I just freeze and hyperventilate until it finally stops.

Now he needs cancer surgery but I cannot support him in hospital or even visit him and he does not want me to try either. This makes me very, very upset.

CBT should be starting soon but I do not know if it will help, already maxed out on antidepressants plus diazepam for hospital use.

The hospital have admitted noncompliance with the NHS AIS but then the hospital manager wrote to me concerning my other complaint about the multiple mistakes and excuses made for not providing the prebiopsy covid screening and I felt used the this opportunity to berate me for being a naughty girl on the day of my biopsy. I do not feel that taking part on the hospital's newly formed Deaf Working Party to discuss improvements will work with the senior manager so hostile.  I am prepared to try and work with the hospital to improve things for other people if the senior manager retracts this criticism of me. Telling the staff, patients etc about the AIS with posters, leaflets and information in their website would be a start. This has still not happened after 6 months. No staff have received any training in the AIS since it was introduced in 2016 and the hospital are still non-compliant. My concern is that nothing will be done until they have the perfect computer system to support the AIS rather than incorporating some measures for staff to follow now.