“Listen to me.” - Healthwatch Lancashire...“Listen to me.” October 2017 1 Introduction The aim of this project was to see what health and social care services look like through

“Listen to me.”Health and Social Care through the eyes of

young people

October 2017

A Healthwatch Lancashire report summarising the views of young people across Lancashire about what matters most to them when it comes to their health and social care.

Visit: www.healthwatchlancashire.co.uk Call: 01524 239100 Twitter: @HW_Lancashire Facebook: @lancshealthwatch

© Healthwatch Lancashire 2017

“Listen to me.” October 2017 1

Introduction

The aim of this project was to see what health and social care services look like through the eyes of a young people. This required us to radically overhaul the way young people are involved in Healthwatch Lancashire and to ensure they have a say about the health and social care services they receive.

Healthwatch Lancashire commissioned The Children’s Society to utilise their expertise in engaging with young people. The Children’s Society aimed to recruit young people who would be Healthwatch Champions and would take part in community engagement activities with other young people to obtain views and experiences.

The project ran from April 2016 to March 2017, recruiting 11 Young Healthwatch Champions and consulting with 198 Children and Young People.

Contents Introduction Page 1

MethodologyPage 2

Overview of age groups and areas Page 3

Key ThemesPage 3

What young people say about hospital servicesPage 4

What young people say about GP servicesPage 8

What young people say about dentist servicesPage 10

What young people say about mental health servicesPage 12

Patient storyPage 13

Other servicesPage 17

ConclusionPage 19

“Listen to me.” October 2017 2

MethodologyOver the 12-month period 2016 to 2017, 11 Young Healthwatch Champions have been recruited by The Children’s Society, ten of these remained volunteers with seven of these working as proactive members of the group and regularly attending events. The Champions are aged between 16 and 20 years old, some just finishing school, some at college and two are not in education or training. All are female bar one male.

The Champions have been trained to interview and record findings on a one to one basis and in a group setting to facilitate Care Circles. These Care Circle activities allow the Healthwatch Lancashire team to listen to views from communities and seldom-heard groups which have included older people, carers, those with learning disabilities, those with visual or hearing impairments and young parents.

They produced question prompt cards and pictorial illustrations to aid communication with their peers. The Children’s Society supervised their engagement activities giving regular updates on their progress and training requirements. The Children’s Society submitted quarterly reports to Healthwatch Lancashire for monitoring and guidance throughout the project.

A variety of tools have been employed to gain the views of children and young people. Including ten Care Circles, six Case Studies/Patient Journeys and two Mystery Shopping exercises and engagement with professionals who supported the Healthwatch Champions. A presentation was made to the Children’s Commissioner by the Healthwatch Champions.

The following groups and organisations were involved in engagement activities:

East LancashireRhyddings Business & Enterprise School (Health & Social Care Group)Gannow Community Centre (Holiday Club)The Space BusBurnley General HospitalBurnley Youth ZoneRoyal Blackburn HospitalValley Street Community CentreBrunshaw Youth CentreYorkshire Street Medical Centre

Central LancashireLibrary House SurgeryRoyal Preston HospitalThe Chorley Surgery

West LancashireLancashire Police Cadets, Skelmersdale

North LancashireThe Junction LancasterLancashire North West Girl Guiding, Lancaster and Garstang DivisionRosebank Medical Practice, Galgate

South CumbriaNHS Choices OnlineAnonymous Mental Health Setting, Kendal

“Listen to me.” October 2017

3

Overview of age groups and area distribution of engagement

Key themes identified Key themes have been identified across the services as part of the work which are age related. Other key themes such as environment, staff, waiting times and treatment have been identified under each of the health services: Hospitals, GP’s, Dentists, Mental Health and Other (Pharmacies, Care Homes, Sexual Health, School Nurses, and Walk-in Centres)

Age-related themes

The younger children 12 years and under suggest that they are happy with the services but occasionally staff talk to their parents and not directly with them. These young people reported that the doctors and nurses were nice to them and made them feel safe.

The middle age group of 12-14 years reported that they would like to be separate from the younger children when they are inpatients at the hospital as they feel very restricted and out of place.

The majority of engagement events consulting with young people have been completed in East Lancashire, many consultation activities with professionals have been in Central and South Lancashire with the least engagement opportunities in North Lancashire

The young people consulted have predominately been between the ages of 8 and 16 years, with most of these being under the age of 14. The least engaged being the 17/18-year-old category.

198 Children and Young People were consulted with throughout the project.

PercentageofAgeCategoriesConsulted

0-7 8-16 17-18


4

The older age group of 14 years and above were under represented however, key themes included issues with doctors and in particular gynaecological and mental health difficulties were highlighted.

Service themes

What young people say about hospital services Young people appreciate a clean friendly environment and want toys and activities appropriate to their needs. They care about the way they are communicated with and feel safe and positive with staff who talk directly to them in a fun and friendly manner. They feel disrespected and experience a loss of dignity when they are kept waiting for appointments, are not spoken to directly or given adequate time to have their treatment explained; or the environment and actions are not age appropriate.

The hospital environment

Positive experiences

“It’s clean and hygienic”

“It was a better hospital than the other one as there was a really nice nurse who was very friendly”

“The entertainment provided was good”

“The children’s ward facilities such as TV are also good, the TV is free but it’s limited in times as children need to go to bed”

“I liked the toys”

55%

32%

65%

32%

57% 49% 45%

68%

35%

68%

43% 51%

HOSPITAL G.P. DENTAL MENTALHEALTH

OTHER ALLSERVICES

ComparativePercentageShareOfPositiveAndNegativeComments

AcrossServices

%Positive %Negative

376Commentsarerecordedfromengagementactivities.Ofthesethereare184positiveand192negativecommentsabouttheserviceswhichequatesto49%and51%respectively.YoungpeopleconveyedagreaterpositivepercentageofcommentstowardsDental,HospitalandOtherServicesthanforGPandMentalHealthServices.


5

“I am happy and have made friends”

“The beds are comfortable and warm at night and the blankets keep us warm”

“It was really good that there’s a wet room”

“They have a large range of food and sometimes they like it!”

“The Palliative Care Relatives Room is ok and they were given support”

Negative experiences

“The food was horrible and it wasn’t very clean”

“There’s nothing to do in the waiting room”

“It is always busy and sometimes difficult to find a parking space”

“There isn’t much choice for food and they don’t have many things in the waiting area to play with”

“She didn’t like the food”

“There are long waiting times and no refreshments”

“The waiting areas very quiet even though people wouldn’t of be told off for talking quietly”

“Not having any free magazines for young people”

“There are too many Cancer posters on the walls”

“The chairs were not comfortable”

“You are not directed where to go well enough”

“The vending machine was nearly empty and there wasn’t much choice”

“The x-ray plates were very cold”

“They need bigger car parks”

“There is a lot of hand gel everywhere!”

“They felt uncomfortable as people stare at them when they’re waiting”

“The TV went off at 7pm and they had trouble getting to sleep until late”

“One young person talked about drunken people coming to talk to her and the need for more beds”

“It’s too hot and they feel like this is bad when children have a temperature”

“It’s also too noisy at night and they can’t sleep properly”


6

“I didn’t like the drinks or the vegetables”

“The food isn’t great”

“Everyone is really rushing in there”

“There is a lack of room with ambulances backing up”

Hospital waiting times


None offered


“The waiting was pathetic”

“There can be long waiting times at hospital”

“I was taken to the hospital in an ambulance yet still waited two hours to be seen”

“There are long waiting times, no refreshments and unrealistic time scales for appointments”

“The waiting times are very long”

“They did not enjoy their experience at hospital as it was boring but they did take good care of them”

Hospital staff


“It was very friendly and they gave out teddy bears to distract me when I had a blood test”

“They took good care of us and made us feel happy and safe”

“All were very friendly when they were upset”

“The staff are really friendly”

“One young person likes her doctor as she is female and this makes her comfortable”

“We’re well looked after and made to feel safe”

Suggestion

The group discussed the toys available in the waiting area and stated that they are for very young children and they would prefer a reading corner, some board games or games like Twister.


7

“She was supported at the hospital when her Dad had a heart attack and she was visiting him regularly”

“This hospital is better as there was a really nice nurse who was very friendly”

“The staff were friendly, nice, reasonable and trying to help”

“They stated that the entertainment provided was good”

“One young person recorded that their certificates are awesome”

“The nurses are really nice and look after them well”

“The doctors and nurses are nice, we sometimes understand what they are saying and they are very gentle”


“It was boring but they did take good care of them”

“They didn’t like what was being done to them and the staff didn’t reassure them very well”

“She doesn’t like her doctor because it’s a man and he’s a bit scary”

“She would ask her mum to ask for a female doctor”

“When the staff at the hospital need to carry out small procedures they don’t explain it, they only explain directly to the child when it’s a more complicated procedure. The staff only explain to their parents”

“The lady who did the assessment was dismissive and I felt that she didn’t care. The lady didn’t do any measurements and she was finished very quickly. She sounded like she had better things to be doing”

“They were not directed where to go well enough”

“The doctors talked to them like babies and only talked to their parents not to them directly”

“One of doctors had an American accent and sounded funny”

“Some young people discussed finding it hard to understand doctors with foreign accents.”


8

Hospital treatment


“The treatment was very good”

“They made us feel safe”

“It was really quick and very efficient”

“The doctors always come to check on patients regularly and I feel welcome”

“The staff are very good and give you enough information”


“The staff only explain to their parents”

“Not being able to get suitable food as the hospital didn’t want to discharge her family member with low pressure before she’d eaten but the person needed a specific diet”

What young people say about GP services The young people engaged with want to be listened to by their GP and other surgery staff and treated with the same respect they feel adults get. The young people identified the best service is given by GP’s who listen to them, explain the diagnosis and treatment to them and give them time. A number of the young people expressed concern that when they cannot understand their GP, because of language barriers, communication is then defaulted to their parents when they would prefer to be communicated with directly.

Some young people state they want to be able to choose the gender of the GP who treats them. Some said they want consistency in being able to attend appointments with the same GP. They want to know they have access to and are receiving appropriate medication and treatment, with some expressing concern that they were not getting their needs met. Some expressed that being listened to will result in better treatment and having their needs met.

Participants want to be able to access a GP appointment quickly with an efficient booking system. They want a fit for purpose repeat prescription service that is easy to access. The environment is important to young people and they would like activities and resources to be provided for their age range to curtail boredom.

Suggestion

Two young people stated that they would like to have more colour choice for casts stating that they would like multi coloured ones.


9

GP environment & waiting times.


“The log in screen works very well”

“I liked the Lego pieces but they are sometimes stolen”

“The surgery was nice and friendly and the people are epic”


“The GP surgery appointments take a long time”

“I waited two hours and it was really noisy with nothing to do and it was uncomfortable”

“I would rather go to the hospital as I feel the waiting time is shorter”

“You never get to see the same doctor”

“There are poor booking systems for the appointments and the reception staff aren’t great”

“The repeat prescription service and appointment booking system is awful and not fit for purpose”

“The system doesn’t work for working people as you have to call after you need to set off for work”

GP Staff


“My GP listens very well”

“The doctor was very supportive and good at dealing with mental health issues”

“The staff here are nice and chatty and provide a good service”


“They never listen”

“Our thoughts are not valued”

“We don’t always understand what the doctor is saying and sometimes feel we are being fobbed off”

“The GP’s don’t listen”

“Parents tend to speak for the young people”

“I do not have such a positive experience with my GP as he does not speak very clear English”

“Staff tend to talk to parents and not them”


10

GP treatment


“The young person feels that they can see a male or female doctor if they needed”


“They feel that medication is not prescribed when needed and that people do not always do their job properly. They feel that there are patients with unmet needs”

“Don’t feel that they could go to the doctors without their parents”

“Their parents tend to speak for them”

“They don’t like seeing a different doctor all the time”

What young people say about dentist services The young people relayed the best dentist services have friendly staff who listen to them and deliver pain free care. Young people want dentist services that clearly explain the treatment and options in a clean friendly environment. Where language barriers exist, young people feel relying on parent intervention undermines them. Most young people prefer to be spoken to directly about their care and appreciate dental hygiene advice as a preventive measure.

Young people said they want a clean friendly environment with appropriate seating, toilets and appropriate activities and products to engage them whilst waiting for and during their treatment.

The young people want friendly staff who treat them with respect; who will understand and who will communicate with them directly in a clear manner. They feel the best staff will deliver pain free care or explain their actions and apologise for hurting them.

Listening matters

One participant relayed how the GP surgery didn’t listen to her said “I visited the service four times for the same issue complaining of lethargy and had fainted on one occasion. It took the service three blood tests and four months to diagnose low iron, and medication to treat this was delayed” She feels that her health needs were not met by her GP.

Another young person told how she felt listened to, “The GP surgery provides them with accurate prescriptions and medication and advice on how to look after their health and get better”.


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Dental environment


“The young person used to get a sticker or a lollipop at the dentist and they liked this”

“They have things like magazines, toys, a tropical fish tank and play area and they give you free water, tooth paste, stickers, chewing gum and a free nail polish”

“A good dentist with helpful and friendly staff, the place is comfortable and the waiting times are quick”


“There’s nothing to do in the waiting room”

“There is nothing for them to do and they act like they don’t like me”

“I don’t like the smell”

“It only has three chairs for waiting patients”

“The toilet facilities are awful, not very clean”

Dental staff


“The staff are very nice and friendly and treat them with respect”

“The young person has a positive experience with her dentist as she always says what she is going to do before she does it”

“The young person could let them know if she wanted them to stop at any time. This made her feel a bit better”

“They made a mistake in injecting the wrong part of her gum but it was okay because they said sorry”

“Staff want to talk to them and the care they get is pain free”


“We never understand each other. This makes it quite awkward”

“Some of the staff are patronising and they only talk to mum and not to them”

“They act like they don’t like me”

“It’s really bad as the staff are rude”

Dental treatment


12


“Even though it hurt the dentist said she could let them know if I wanted them to stop at any time. This made me feel a bit better”

“She was happy with the treatment at the dentist”

“The dentist gives her really good advice about cleaning her teeth and now she doesn’t have any problems with them”

“The staff want to talk to them and the care they get is pain free”

“This dentist received a good review with good appointments available”


“The dentist is too rough and not careful enough when dealing with her mouth”

“Sometimes they don’t explain things well enough as they removed some teeth to fit a brace and didn’t tell me that they were adult teeth and wouldn’t grow back”

“They use banana flavoured fillings and she doesn’t like banana”

What young people say about mental health services Young people spoken to said they want mental health services to be more flexible in their approach so they do not feel they have had their freedoms restricted unnecessarily. The female participants want to be escorted to the toilet by a female nurse. They want to be fully informed and to be involved in the decisions for their care and treatment and they want to feel that they have been listened to. They feel the specialists making the decisions about their health should see them more so that they get to know them and their conditions. They want to know what rights they have.

They want to be consulted on the choices for the furniture and decoration in mental health environments. They want to have more activities to do and to be able to go outside more often. They didn’t want to be excluded from a room because the rating on a film or computer game was above their age range when this would not happen at home. They want staff outside of mental health services to have a greater awareness of how to support them appropriately.


13

17–year-old female talks about Mental Health

I decided after a very long time – about three years – to finally go to my GP to get help for my depression and anxiety. What a waste of time and effort that was! I think it was absolutely pointless and I could have skipped out all the worry, nerves and sweat of just walking in and booking an appointment if I'd have known how useless it would be. Firstly, it took a solid three weeks for me to finally get an appointment. In that time, not to say that I would have, but I could have had multiple panic attacks resulting in hospitalisation, self-harm, attempted suicide or even committed suicide, all because they didn’t even consider putting me in earlier. My guess is because I was a young person by myself they didn’t think it would be too serious for me to be alone - which is not true.

When I finally arrived after the three-week wait, after sweating palms and a racing heart and shaking hands, there was a 25-minute delay, which I had no problem with. Patience is key.

When I spoke to my doctor, it looked as if she was half asleep, it was only when I was about to start crying that she actually tried to pay attention. I explained my situation, how I was scared that I'd do something that I'd regret or even take my life. I explained how I am always afraid of what people think of me and I can never put myself forward into the world.

With this, she replied, "I think you have got the thought of depression in your head. Everyone has depressed days; it doesn’t make you depressed." Now the reason I never spoke to anyone about this is the fear they would say something along those lines. The fear they'd shrug it off, say I was over reacting or looking for attention, which is why I never spoke to anyone about it. Never did I think that it would be my doctor who said it.

Don't get me wrong, the doctor had every right to say her opinion but I know for a fact that the situation I was in was more than just a 'bad day' so for her to say that felt like there was nowhere else I could go to get help. I was lost.

She then asked why I never brought my mum with me and I explained that I didn’t want to put my problems onto anyone else. I didn’t want to upset her or make her feel it was her fault. I was afraid of her reaction as well, what she’d say. I just couldn’t do it. With this, the doctor said she couldn’t really help me until I told my parents which was a total lie.

She then printed out some paper about anxiety (not depression) and said she'd contact me about counselling and where I could go for help. I felt as if she was rushing everything and just trying to push me out so she could see the next patient.

She never did contact me and I continued with my problems for months afterwards until I finally got the courage to tell my best friend but I'm still struggling with anxiety to this day.

I can honestly say, I'm not going to bother going to the doctors again. What’s the point in wasting any more of my time, and the doctors it seems.


14

Mental health environment


“The place is kept clean and the food is good, although a little repetitive”


“The sofas aren’t comfortable and need replacing, the rooms themselves could do with refurbishment (although they are due to move premises), the coffee isn’t great and they don’t have a choice in any decisions of what is selected”

“One of the first rooms they entered had negative quotes on the walls and mirrors triggering their thoughts of self-harm”

“It is a smoke free site not allowing anyone to smoke if they needed to”

“She would like to be able to see out the window at night as this is what she would do at home to occupy herself as she cannot sleep”

“I would like the place to be more secure as it is too easy to get out if they set their minds to it”

Mental health activities


“They go to the education rooms every school day and the staff are supportive”

“They are being involved in making the food and some of them enjoyed this”

“They have access to activities such as animal care and local walks”


“Being bored as Pool is the most entertaining thing available”

“I’m frustrated at having to leave the room if others are playing a computer game that is rated 15/16 even though close to this age and would be allowed to do this at home. They could be more realistic about allowing her to stay if she can’t play it”

“They would like to be able to go outside more and have access to foundations such as Make a Wish”

“One young person discussed needing new clothes, which parents should provide, but they stated if you have no parents this can be really hard”

“It is a smoke free site”


15

Mental health staff


“The general day and night staff are very nice and will help as much as possible”

“I feel that they are really caring”

“The school staff are supportive in understanding that they have wider issues so will not force them to take part using sanctions”


“They are always so busy observing and preventing people from leaving that they are often limited in activities”

“They feel that the Psychiatrist feels sorry for them”

“They feel that the Doctors don’t really listen to what they have to say”

“They feel that CAMHS (Child & Adolescent Mental Health Service) labels them and then fails to see their individual needs when deciding on treatment”

“Most weren’t sure if they had a social worker or their social worker was not well informed about mental health issues”

“They would like the education staff to be more informed and better trained in their mental health issues as they have anxiety regarding the access to cupboards and scissors that are easily accessible and should not be”

“They discussed the presumption that they function at a low ability educationally and sometimes feel patronised with the work they are given or the staff are so conscious of the mental health issues that they feel patronised in the way they are talked to”

“Some young people did feel that they are pushed to complete work when they feel that they cannot”

“In general, the group felt that the professionals involved, outside of unit staff, should be more informed about mental health”


16

Mental health treatment


“The GP was very supportive and good at dealing with mental health issues”


“Belongings taken for personal safety and they felt this was unfair as these are their things and if they chose to use them in a destructive way then that should be their choice”

“They feel that they have to prove themselves to have access to their belongings”

“They feel that the hourly observations are too much”

“They feel that they are punished for making mistakes that they feel are out of their control”

“The use of language and attitude of staff used when supported in an emergency situation”

“The need to be observed on a one to one basis and privacy issues”

“The group feel that there is no negotiation regarding their medication, particularly when they feel it isn’t working, and they are not provided with enough information about their treatment and decisions that are being made about them”

“Families sometimes find it difficult to get to them even if they don’t live that far away because they have been moved”

“Some things aren’t explained fully enough, one young person reported that if she knew one to one meant all of the time she would not have agreed to it”

“They feel that the Doctors don’t really listen to what they have to say and they only see the Specialist every now and again who makes all of the decisions about their treatment, the group feel this is not appropriate as they do not see enough of them to make informed decisions”

“They feel that CAMHS labels them and then fails to see their individual needs when deciding on treatment”

“Mum is trying to get them to go to Child and Adolescent Mental Health Services (CAMHS) but they don’t want to go - no reason given”

“They would like to know more about their rights and be listened to more”

“I want more support with going back to school and going home as they are very scared of this prospect and were unsure if any support will be offered”


17

Other services Other Services that some young people gave their views on included Pharmacies, School Nurses, Care Homes, Sexual Health Services and a Walk in Centre.

Pharmacy

Young people are positive about pharmacy services that have friendly staff, medications are in stock and the staff treat them with respect as young people.


“They are friendly and always have what their mum needs in stock”

“She goes to this chemist to pick up her prescription for herself even though she is very young. The people there are very friendly and always give it to her after asking if her mum is in the car”


None offered

Care homes

When visiting a care home, they want to experience friendly welcoming staff in a clean environment.


“The staff are enthusiastic but it has been a few years since they have visited”


“Hygiene at the care home was poor and staff weren’t using gloves”

Sexual health

Young people want sexual health services to be available when they are needed.


None offered


“One young person discussed the lack of sexual health support in one area and this was echoed by all the young people”

School nurses

Young people had a mixed availability of school nurses across the county with some only accessing a school nurse up to primary school.


18


“Some young people knew that they could see a school nurse on Thursdays”


“All of the young people stated that they don’t see the school nurse; one stated that they haven’t seen one since primary school”

Walk-in centres

Young People voiced that Walk-in Centres should be accessible for longer hours.


“The walk-in centre covers most things”


“The cut backs have meant that it closes earlier now so isn’t available when people need it”


19

Conclusion

Across the services young people showed their appreciation for staff who listen to them, explain the treatment and engage them in decisions about their care. The want a quick reliable service provided in a pleasant, clean and non-threatening environment with activities to keep them occupied when waiting for appointments.

Some of the female young people prefer to have a practitioner of their own gender or to be able to be given the choice. Consistent negative comments were made about not being communicated with correctly or taken seriously because of their younger age.

The “Comparative Percentage Share of Positive and Negative Comments Across Services” chart on page four shows that overall there are as many positive as negative comments about services. However, the GP and Mental Health Services recorded a higher percentage of negative comments compared to positive comments than the other services.

The qualitative analysis highlights these two services above the others were regarded by the young people to be not treating them with the respect they would be shown if they were older. Most wanted to be talked to directly and not through their parents.

Young people want information and inclusion in the decisions for their care.

The Children’s Society reported that the Healthwatch Champions:

• “Really enjoyed the work and have made a fantastic contribution and commitment to the project to gain the voice of their peers.”

• “Gained skills or tried something new.” • “Enjoyed the project and would potentially like to continue under the guidance of

Healthwatch Lancashire.” • “Particularly enjoyed volunteering in a hospital environment and are most

enthusiastic about engaging with and representing the views of their peers.”

Healthwatch Lancashire would like to show appreciation for the work of the Young Healthwatch Champions and The Children’s Society for supporting them in their role.

The Healthwatch Champions are:

• Aaron (Chorley) • Molly (Clitheroe) • Ellie (Oswaldtwistle) • Zara (Accrington) • Rebecca (Chorley) • Tara (Oswaldtwistle) • Davina (Accrington) • Faye (Kendal) • Mia (Blackburn) • Courtney (Burnley) • Saliha (Accrington)

Documents

“Listen to me.” - Healthwatch Lancashire...“Listen to me.” October 2017 1 Introduction The aim of this project was to see what health and social care services look like through