Dementia Support Line
Lived Experience Advisory Network Report for September 2025
About Dementia Jersey’s Lived Experience Advisory Network (LEAN)
LEAN is a network of 7 groups, including groups for people diagnosed with dementia and other groups for the family and friends of people with dementia.
The 7 separate groups each meet 4 times a year to discuss a subject of importance or concern. These subjects are either suggested by people attending LEAN groups, or by the staff, volunteers or trustees of Dementia Jersey.
Because of LEAN’s advisory purpose, the outcomes of the discussions and the recommendations of the groups are collated in one document (with all personal details removed) that is then shared, as appropriate, with government departments, health and community service providers, businesses, other charities and our team at Dementia Jersey.
All LEAN documents are also available on our website.
LEAN is facilitated by our Clinical Lead.
Please contact Dementia Jersey if you would like more information about our LEAN.
Email: info@dementia.je
Call: 723519
Overview of the LEAN meetings in September 2025
People attending LEAN meetings in September, including people with dementia and family carers, were asked to share their experiences of attending hospital, or being admitted to hospital, including transport to hospital, the out-patient departments, A&E/ED, and in-patient wards.
A summary of the discussions can be found in the section below, followed by a further section with LEAN’s recommendations.
A total of 61 people contributed to these LEAN discussions in September.
The outcomes of the LEAN discussions in September 2025
- Firstly, we asked people attending the LEAN meetings to tell us about their experiences of getting to the hospital, including being taken by ambulance.
Most people attending LEAN told us that their experiences of getting to the hospital were not positive with many describing the difficulties they had particularly concerning parking. The following experiences were shared during the LEAN meetings.
“Parking at the hospital is terrible. The disabled spaces have been reduced from 8 to 3 at the top of the ramp, so I can’t get parking up the ramp.” (In response to this comment there was much head nodding from other attendees.)
“Chaos.”
“Parking at Gwyneth Huelin was so stressful. We couldn’t get in there, so I just parked on a yellow line. I had no choice.”
“If you really are ill, don’t bother trying to get there, just call an ambulance. That’s my advice from my experience.”
“And getting to Enid Quenault at Les Quennevais is so difficult. It’s two buses and it takes so long.”
However, everyone who had been taken to hospital by ambulance spoke positively of this experience even though this was at a time of acute illness or crisis for them. LEAN attendees shared these experiences.
“I thought they were brilliant.”
“They got there quickly, they were amazing and friendly, brilliant and cheerful, helpful, and kind and I felt safe. Excellent.”
Not many people shared their experiences of the patient transport service because very few had ever used this. One person however said they had trouble getting to the hospital, but when they tried to use the patient transport service that were told they did not meet the criteria for this.
Another person said that they planned to use the patient transport service, but when the minibus arrived the driver refused to take them because their wheelchair did not have an integral seatbelt.
- We then asked LEAN attendees to share their experiences of the out-patient departments, with the following experiences voiced by LEAN attendees.
People’s experiences of the out-patient departments at both the Gwyneth Huelin wing at the General Hospital and at the Enid Quenault (EQ) out-patient department at Les Quennevais were mixed.
“There is always such a long wait to get that letter saying you can see a doctor and then there’s such a long wait when you get there.”
“The directions were not well signposted, so I didn’t know where I was meant to go and this is worse than in the hospital in town.”
“The signs start off OK and then they stop, they don’t continue so I got lost.”
“I don’t see very well so I did have trouble reading things there.”
“They need to be careful not to assume we can all read, and hear, and see well and that we can all understand things. It’s always tricky for me.”
“It’s difficult and maybe not quite right to say this, but the staff these days, 90% don’t speak English clearly and they just rabbit on at you. And it’s harder if you have trouble hearing and with dementia to make sense of what they say.”
Other LEAN attendees had very positive experiences, saying,
“I had a very good experience at the out-patients. The staff were absolutely superb.”
“Having a receptionist where you can see them when you go in is good.”
“It (Memory Assessment Service (MAS) at EQ) is where I got my diagnosis, it’s a wonderful place, and this is because the receptionists are great, and there’s a lot of information to take.”
“I’ve never had to wait long. I’ve been in and out in 5 minutes.”
“The buses are good, but the wait time when you get there depends on how busy they are.”
“We find the reminding texts are good though my wife takes care of all that.”
“It is a wonderful place.”
And then one attendee said with some humour,
“Yes, there are signs which help, and the best one is ‘Way Out’!”
- Thirdly we asked LEAN attendees to share their experiences of attending the A&E/ED.
It was interesting to note that most LEAN attendees had either been a patient at A&E/ED or had attended A&E/ED with a close family member. And although this is a busy department in a small space, most people’s experiences were positive. These are some of the experiences that were shared during LEAN meetings.
“Fine, it was fine. It was what I expected.”
“It was large and the staff were respectful to a degree that they could be.”
“I thought it was OK. There were some people waiting longer, but I think it depends on what is wrong, so you have to be a patient patient.”
“It was flat out, but the staff were brilliant. They come out and they ask if you are alright in a caring way.”
“The staff were very good. I can’t fault them and they were really good at the technical stuff.”
“I thought they were fairly polite and courteous under all the pressure they must be facing.”
“Yes, they give you confidence when they are talking to you, so you feel safe and this is the most important thing I think.”
“The bedside manner, talking to you in an understandable way, that was reassuring.”
“Those people they deserve a pat on the back.”
People attending LEAN did however find that the space in the department was an issue for them. Some people commented,
“They are doing the best with the space they’ve got, but larger, brighter rooms would be better and the toilets, I didn’t know if I could use it because it didn’t say if it was for a man or woman.”
“I was relieved to get to see a doctor, but the environment was very claustrophobic with staff working close together and cubicles too tightly packed.”
“It was cramped and I could hear everything I didn’t want to hear that much.”
“The person I was with found it confusing because the door was open and they could see things that troubled him and there was nothing to distract him. I thought it was all quite tatty too.”
“The toilets are a problem, and the hand dryers are frightening as they are so noisy.”
“It wasn’t very private, you are so near other people and can hear everything, but I guess this is how it is.”
“The waiting was hard. It wasn’t very good in the waiting area and there was nothing to do, and then some other people waiting made it hard for P to feel comfortable and safe.”
- And finally, we asked people about their experiences of being admitted to hospital and of their stays on the wards.
Most of the conversations about the in-patient services were very negative, with some saying the hospital was,
“So terribly understaffed.”
“It’s only adequate.”
“Some mistakes in medical practice were clearly made like when the tourniquet was left on.”
“Yes, it was bad, there was noise in the ward all the time.”
“The gowns were bad with no apparent concern for people’s dignity.”
“My friend was in hospital for 8 months, initially for a broken arm but as there was nowhere for her to go she was there all that time with absolutely no social interaction or activity.”
“If you are visiting someone who is really ill and you need to be there for a long time, after a while the café closes and there’s nowhere to buy food or a coffee and you can’t leave the person who’s so ill to go out and get food.”
“You have to accept that other people are there too and you have to sympathise with them, but there was a man crying out who I think was in the war, so it’s not really in your control so you have to just put up with it.”
“The lights were a nuisance, but the next time I went I took a mask to cover my eyes and ear plugs.”
“Isolation in a single room. That was tough.”
“On the ward the TV was on constantly in the day and only went off at 9.00 pm.”
“The worst thing was that there were male and female patients on the same ward and this made me feel very vulnerable.”
Some LEAN attendees also spoke at length about the communication difficulties their relatives had with hospital staff. Sometimes they accepted this was a consequence of the patient’s dementia, but many spoke of situations when the staff seemed not to know how to communicate with or understand the challenges people with dementia experience. Some LEAN attendees also said that because the staff were not fluent in English or had strong accents, the person with dementia found it difficult to understand them. The following were some of LEAN’s experiences.
“P was terrified, really terrified, because he could not understand the staff.”
“It was nice coming out!”
“They were really quick at getting me a taxi to get home. They know I was cracking up in there.”
“The communication was patchy, I had questions like, am I going for a scan, but it’s unnerving asking questions if you have pain and are struggling with your memory. It would have been nice if they explained things.”
“I didn’t know who anyone was and the staff did not introduce themselves.”
“It seemed the staff did not know that P had dementia, and I think this is what led to P becoming aggressive. P was so frightened he tore the canular out and wouldn’t get out of bed. I noticed that another patient with dementia bought their own carers in to help with meals. That was a good idea.”
“My relative called to go to the toilet but they ignored the buzzer for 20 minutes, so they ended up having to change the wet bed, but they were so annoyed about this. This was sad to see.”
“I saw someone in another bed who did not eat his food, but he couldn’t eat it because it was left at the end of the bed on a table that they couldn’t reach, but he didn’t make a fuss, because he couldn’t.”
Many other experiences were shared of people with dementia being moved between bays and wards which were described as, “very upsetting” for people with dementia.
“When they say you can go home it takes a least a day to get all the stuff ready and the tablets and things.”
And another person shared an experience where controlled drugs they had bought in from home were being kept under a nurse’s desk, which then went missing. Following this, this person’s relative then felt they had to be present all the time to make sure the right medication was given to their relative. This LEAN attendee added that they themselves then found the missing drugs when they went to look to see if they were on another ward.
LEAN attendees also spoke at length about Do Not Resuscitate (DNR) plans with some sharing experiences of feeling these being “insensitively thrust upon them” and not knowing how to respond in the moment.
In contrast to these statements, others voiced their positive experiences saying,
“It was all very, very good. They knew what they were doing. They were competent and I felt reassured.”
“It was all fine. The grub was very good, though I’m going back a few years.”
“I was in the hands of angles! Maybe in case I went to the real ones.”
And finally, some attendees also shared their experiences of going to hospital in the UK, all of which were positive and complementary. The following experiences were shared during the LEAN meetings.
“Southampton – I was straight over from Jersey and they done me well. I was happy for that.”
“It was excellent. It could not have been any better. The organisation of all my travel and treatment was seamless.”
LEAN’s recommendations
- Recommendation: Improving transport to the hospital
Parking: LEAN attendees recommended new, safe dropping off points for people attending the out-patient clinics both at the General Hospital and at Les Quennevais. A further recommendation was that this should be a priority in the development stages of plans for the new hospital.
Drop-off zones: LEAN also recommend that parking and drop off zones should be made available for people who do not have ‘Blue Badges’ as some people may have significant disabilities but the person transporting them does not have a ‘Blue Badge’.
Patient transport services: There was general agreement that the criteria for this service should be broadened as this would benefit many people who struggled to get to hospital appointments.
- Recommendation: Improving out-patient services
Signs and receptionists: LEAN attendees recommend clearer signage throughout the buildings and also having receptionists available near each entrance at both hospitals who could direct people as necessary.
Staff training: A further recommendation was for training for all staff, including receptionists, porters and clinical staff to improve their understanding of the range of symptoms people with dementia might experiences and for tips for better communication.
- Recommendation: Improvements for A&E/ED
Waiting times: LEAN attendees said that the waiting time to see a nurse or doctor depended on the day and time of day that you were there, so they recommend, if possible, that there were more staff at busier times like Friday nights.
Related to this, LEAN also recommend a clearer notice explaining why there may be delays and why some people may appear to be queue jumping and others waiting longer.
Waiting areas: Due to the distress that some people experienced or witnessed in others while waiting in the busy and sometimes noisy waiting room, LEAN recommend the addition of a quite area for people with dementia and others with special needs.
Others recommended some helpful distractions for people with dementia, including a picture on the wall, a TV, or iPad to use.
Others recommended some softer colours on the walls to relieve the white clinical look of the space.
And finally, a drinks machine, or other access to a drink, was recommended, though LEAN appreciated this might not be appropriate for some patients.
- Recommendation: Improvements for in-patients at the hospital
Access to snacks and drinks: Given that the café and snack bar in the hospital are not open 24/7, LEAN recommend an extension to the opening hours for these and that this should be considered in the plans for the new hospital. As an alternative some suggested that snacks and drinks should be offered to the relatives of very sick patients, including patients with dementia, who need to stay at the hospital longer to help care for the patient.
Specialist dementia care ward: Because some people felt that the staff on the wards did not appreciate the various and individual needs of people with dementia, LEAN recommend that there should be a designated ward for people with dementia with trained staff who were skilled at caring for people with dementia.
Patient identifiers: LEAN attendees who knew about the forget-me-not patient identifiers for people with dementia, said they had seen these were not routinely being used. They therefore recommend that these should be used and that all staff should be trained to recognise these and know how to support people better while in hospital.
Mealtimes and drinks: Because some LEAN attendees felt staff did not appreciate the reasons why people with dementia may not eat their meals or drink enough fluids, they recommend a review of the procedures at mealtimes. LEAN recommend that this training should also be available for all staff.
Moving beds, bays and wards: Due to the distress that many people with dementia experienced when they were moved from one bay or ward to another, LEAN recommend that, as far as possible, people with dementia should not be moved once settled in a bay and a ward.
Dementia training: LEAN recommend that all staff throughout the hospital should have advanced level dementia training to enable them to care for and communicate better with their patients with dementia.
Do Not Resuscitate (DNR) plans: Because some relatives felt they were asked to decide on DNR plans without time to consider the implications of these, they recommend very specific training in communicating with people in critical or end of life situations.
Activities and interactions: Because many LEAN attendees said their relatives or they themselves did not have many opportunities for social engagement or meaningful activities while in hospital, they recommend the appointment of a specialist dementia activities coordinator and that patients are also taken out for a walk, and to the local park if appropriate.
Hospital gowns: As many people need to wear these and because of their open back design, LEAN recommend the use of gowns which provide more cover and therefore protect people’s dignity.
Time: In response to one LEAN attendee saying, “All they need to do is just give people with dementia more time” all other LEAN attendees said this would be the most helpful thing.
- Recommendations: For the new hospital
Most LEAN attendees said that their recommendations for improvements to our current hospital and its services were valid for the planned new hospital though some additional recommendations were for smaller wards and more private rooms to minimize noise and disruption, a shuttle bus service from various locations in town, including the bus station, and an accessible garden for in-patient use.
Dementia Jersey – September 2025