We are now ready to share the feedback we received, which has been positively and gratefully received by the Service Improvement Team at CHFT who are working together with us to make changes to improve their services for people with sight loss.
How The Groups Worked
Two groups were held on Tuesday 25th May, one via Zoom video call, and one via telephone conference call.
The rationale for the sessions was to identify any areas for improvement in services at Calderdale and Huddersfield NHS hospitals, and to highlight any recurring themes that we could use to plan subsequent focus groups.
Everyone had a chance to contribute their feedback and suggestions. Several themes arose, but the most common issue in terms of negative experiences was a lack of Staff awareness around sight loss, and the things they need to consider for a blind and/or sight impaired person, in order for them to have a positive experience.
It was agreed by all participants that the next quarterly steering group in September 2021, should focus on ‘Staff Training and Awareness’.
Several participants have agreed to be filmed speaking about their experiences, and to offer practical solutions which may be beneficial and bring a ‘human element’ to staff training sessions.
Feedback & Suggestions for improvement.
Outpatients. Signage & directions / orientation
‘The signs at Calderdale are too high and not at eye level. Also, the arrows are too small, as though they have been ‘squished’ on to fit on the sign. Why not make the signs bigger, and make the writing bigger, and lower them?’.
‘I had to go to Huddersfield, and I’m not familiar with the place, as I usually go to Halifax. It has long corridors, and I couldn’t tell if I’d gone too far as I seemed to be walking a long way. I didn’t know where I was. I finally found the waiting area, where they met me and took me into another room to be seen. After this they told me to go back to the place I had been waiting, but didn’t show me where it was, and I ended up turning the wrong way and getting lost. I finally asked a passer-by to lead me to where I needed to be; I arrived ten minutes late to be greeted by ‘where have you been?!’. I ended up apologising for getting lost! They could have told me which way to turn, and given clear directions, or better still, led me back there. Maybe a volunteer could have been assigned to me?’
‘I agree about Huddersfield, long corridors cause disorientation for blind people’.
‘I went for a CT Scan appointment. I needed directions, either a map, or a clear set of verbal directions, E.G ‘Turn Left and go around a corner, then go to right etc… they have to explain the directions as though they were walking the route themselves with their eyes closed’.
‘I find it really hard to find the lifts at Huddersfield’. MOST AGREED WITH THIS.
‘Having adequate directions is PARAMOUNT. Not just a map, which people may not be able to see / understand, but a clear set of fully explained verbal instructions at the very least, but it would be better to have a volunteer to aid people to their appointments’. ALL AGREED with this statement.
‘Can they appoint people to ‘meet & greet’? such as volunteers who would meet you at reception and guide you through the whole appointment, not just taking us to the waiting room, but the whole process , from the waiting room to the appointment and back to the exit at the end’.
‘..perhaps they can recruit at universities and recruit students or maybe retired people?..’
‘ I always go to reception and ask for help when I arrive. I tell them I’m blind as soon as I go into the building, and even though I am being ‘demanding’, if I wasn’t I’d struggle. Luckily I’m confident enough to approach them and ask for help but many people, especially older people don’t have the confidence and don’t want to feel like a burden’.
‘..maybe they can add to appointment letters – words like, ‘go to reception and show this letter and they will get someone to assist you’.. or something like that, which gives people permission/ empowerment to ask for help?’.
‘..PEOPLE NEED TO BE EMPOWERED TO ASK FOR THE HELP THAT THEY ARE ENTITLED TO!’
‘I have experienced the same issue at both CRH and HRI Eye Clinics. They call you, but you don’t know where they are, or where they’re going! They say ‘follow me’, but you don’t know where they are to follow them’
‘Same happened to me, I’d expect more from the EYE CLINIC! I think it is worse at Huddersfield, I have more problems there than Calderdale which is usually better’.
‘ I think Calderdale is better than Huddersfield. At CRH, at the desk, they tell you where there is an empty chair, and they link arms with me to help me. I agree Huddersfield are not as good’.
‘I went to Huddersfield. It was very good. They explained everything and detailed the surroundings, in terms of where things were, such as the chair, the door, the corridor etc. I hadn’t been before and everything was new to me, but they signposted and explained the whole process. It was a very good experience’.
‘Covid Volunteers need ‘leading training’. I know they need to keep a 2-metre distance, but in our case, they need to touch our arms, so need to be given adequate PPE so that they can get close enough to lead us properly’.
I went to the Calderdale hospital as a sight impaired person with a disability on 12th May. I was on crutches having severe mobility issues. I was offered a wheelchair at the door then the person was that busy talking to someone else she forgot about me and didn’t bring one. My friend took me to the hospital as I was having the mobility problems and I was sent to the teaching area and although there was only one other person apart from the nurse at the front I was asked to go to the other end of the room, The nurse could see I was struggling on crutches. She clearly hadn’t a clue what to do. Then despite the specialised glasses for my sight impairment, the nurse handed me a form – 4 sides to fill in. Of course, I couldn’t see to do this. When we went down the corridor for the covid injection, the nurse went to talk to my friend and ask her what medication I was on, she clearly thought because my legs and eyes don’t work, my mind doesn’t either!’.
I went to A&E on Bank Holiday Monday. It was very busy with lots of different nurses and staff. I was sat for a long time, not knowing what was happening, this is the same for everyone, but it causes so much more anxiety when you can’t see, because you don’t know if you might miss your turn, and don’t know where to go, and you can’t see the TV screen that shows the waiting times and numbers in attendance. The wait seems so much longer. It would be great if they could appoint a ‘champion’ in A&E, to keep checking up on me, just to keep me informed as to what’s going on/ how long the wait will be etc – and most importantly, to guide me to the cubicle, or the other areas E.G X-ray’.
‘Same happened to me, they call you and you don’t know where they are. You have to shout, ‘I’m here’, and its embarrassing. They should know to come and get me when it’s my turn’.
‘I had been waiting for 2 hours and really needed the toilet to I managed to get to the desk to ask, and she said ‘it’s over there’, but didn’t even explain where ‘there’ was, or offer to help me’.
‘They are generally kind and caring people, but they don’t know what they don’t know.. they should put staff through scenarios – let the staff experience it by blindfolding them, and letting them walk in our shoes…, E.G, go to A&E, cover their eyes, tell them to sit and wait and then after a wait, shout their name and call them to the cubicle etc..’.
‘…then go up to them and touch their elbow and speak to them and see how relieved they feel…’ ALL AGREED.
‘They should have a ‘sight loss champion’ in all wards and clinics’. ALL STRONGLY AGREED WITH THIS
‘I went to the ward after being in A&E for two hours. I wanted the toilet, and even though I have a white stick – I am blind and partially deaf, they didn’t help me and just pointed over to the toilets, which I couldn’t find. Eventually another patient took pity on me and took me. All this time (4.5 hours), my husband was sat in A&E as he wasn’t allowed to come with me (due to covid), and no one thought to go and tell him what was happening, or if he could leave. They gave me a meal; I didn’t get a choice and they didn’t tell me what I was eating! What if I’d have been allergic, or had dietary needs etc?’
When my husband was in ICU, I was allowed to take my guide dog in with me and they were very good. I couldn’t have managed without her.
Taxi & Transportation
‘After appointments, waiting for a taxi. It is hard to know which taxi is mine! There is sometimes a line of taxis, and a queue of people. I stand there and have to ask someone to help me by asking the taxi drivers which is mine, but sometimes, if no one is outside, I can hear cars, but can’t tell if it is a taxi or just someone in a car. This causes Anxiety. I once got into someone’s car, who was just pulled up to drop someone off! They saw the funny side but it was humiliating for me’.
‘I once got into the wrong taxi and the driver was very rude and awful. It was very embarrassing’.
‘The staff who book the taxi need to explain to the taxi drivers to announce themselves to the blind person upon arrival, and give the drivers a brief of the persons appearance so they know who to approach. Also tell the driver our name, so they can address us. We don’t all have white sticks or dogs, to make it obvious’.
Access & Car Parks
‘There are not enough Disabled Parking Spaces at Calderdale’ (Everyone agreed with this statement).
‘I was an In-patient for several nights after a Kidney complaint. They pumped me full of fluids, meaning I had to use the toilet a lot. I had to keep going to the loo, but couldn’t find the button to call the nurse and I needed a commode in the night as I couldn’t get out to take myself to the toilet…’.
‘…The button keeps moving, it’s always in a different place!’ (Several people agreed with this comment).
‘My father-in-law is totally blind. The buzzer was always put in a different place, so in an emergency, he had to try and fumble around to find it, instead of being able to just quicky press it’
‘Me too, at night-time I wanted to take myself to the toilet and was able to , but didn’t know once I’d got out of bed whether to turn right or left in the corridor, and ended up feeling like a burden a I had to ask them’.
‘People want to do things for themselves, but in order to do this they need to be shown where things are, such as the toilet, sink, chair etc’.
‘I had a bad experience in Huddersfield after being admitted after a fall. It was after midnight, I hadn’t had a drink, I needed a bed pan, I asked and asked but didn’t get one. It was lunchtime the next day before I got one and I had been stuck, sat in a wet bed all that time. They moved me to ward 3 who were lovely, and they made me tea and toast and were very helpful, but A&E were rubbish as no one listened to me’.
General – Multi conditions / When sight is not the primary reason for visit.
‘In all of my medical encounters the ambulance/paramedics that took great care of me were professional in their duty of care. But more importantly for me they connected with a Human that is Poorly and not just the illness. They from my personal perspective are very rare and special individuals/team’
‘The Macmillan Cancer Unit is excellent. They tell you where everything is, such as where the bed and toilet / sink is. They understand my needs’.
‘I was in the stroke ward after suffering a stroke, which resulted in my sight loss. They were specialists in stroke, but didn’t consider the fact I had lost my sight. They didn’t announce themselves upon entry or exit, they didn’t show me where things were such as my food/drink etc. The consultant went to shake my hand, but I couldn’t reciprocate as I didn’t know he was offering me the gesture! A simple note written on the whiteboard behind my bed saying ‘BLIND’, would have alerted them. They could have also written notes such as ‘announce yourself, or ‘touch his shoulder’ to alert him etc. They could ask people if they’re happy to be touched on the shoulder or elbow, or if they’d prefer a verbal announcement (assuming they’re not deaf) , and write it on the whiteboard for ALL staff to see, as it is all staff from the consultant to the cleaners that need educating’.
‘They need to look at the ‘whole person’ and not just the reason why they’re at the hospital’.
‘They need to speak to the person being seen and not their carer. It is a discourtesy to speak to a blind persons carer. I am blind, not stupid’.
‘Not all blind people can read braille..’.
‘Sometimes they don’t know to what extent your have sight loss, it isn’t always obvious, you have to tell them the extent of your sight loss so they can help’.
‘.. yes, I take my stick and wear my glasses (I don’t need both), just so it makes it obvious for them.’
‘I was sat at reception at the Audiology Dept. I’m blind and partially deaf. The receptionist told me to sign in, but I couldn’t use the computer screen to sign in. They should realise that many older people lose both their sight and hearing..’
‘I am only partially sighted, and my experiences of both hospitals have been quite good, but that is because I speak out and tell the staff what I need. I make a nuisance of myself and I get what I need!.. My mother is blind, and elderly, and the staff are rushed off their feet, so I have to be assertive and make demands to get the care for her that I want’.