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Listening to the voices of young people in Luton oolkit and resources May 2017: Healthwatch Luton s Youth Forum TOKKO Youth Space

Healthwatch Luton Youth Forum 1 Summary Contents Healthwatch Luton ran a Youth Forum after speaking to nearly 100 young people in 2016 who told us they wanted to share their experiences, and have their voices heard. Our first Youth Forum took place on 30 May 2017 with TOKKO Youth Space. The main areas of discussion were: More awareness of services for young people More support for young people accessing services Long waiting times for services Stigma around services such as sexual and mental health Highlighting the lack of integration of services, between schools and educational services and health and social care.

Healthwatch Luton Youth Forum 1 Summary Contents 1. Introduction and overview 2. Overall feedback from young people (summary to date) 3. Youth Forum May 2017 Feedback 4. What to do next 3

Healthwatch Luton Youth Forum 1 1 Introduction and overview Healthwatch Luton has a legal responsibility to listen and learn from the experiences of children and young people who use health and social care services. By providing a strong voice for all age groups in the community, Healthwatch Luton can fulfill its mission as the independent consumer champion. Children and young people can face a range of disadvantages and inequalities. Poverty, disability discrimination and poor housing are some of the challenges they face. The health and social care problems faced by children and young people are significant and complex. Throughout England many children and young people are highly active in projects and initiatives to improve health and social care services. Their input is invaluable, bringing creativity, enthusiasm and their unique perspective. 2 Relevance 2.1 Children and young people in England There are 11.5 million children and young people in England. Of these, 525,000 are disabled children, 63,000 are in care and 30,000 are on child protection registers. The term children and young people is commonly used to cover the age range from 0 to 25 years. The upper age range reflects the issues of transition for young people as they move into the adult world. Services and specialisms for children and young people are often segmented around different milestones and age ranges. These are then reflected in the terminology that is used: Maternity services for mothers, babies and very young children Early years services cover the first 0 to 5 years Primary school children cover 4 to 11 years Young people are often categorised from 10 years upwards Teenagers from 13 to 19 years Young adults from 18 to 25 years 2.2 Healthwatch Luton s focus Healthwatch Luton, with its resources and capacity, have focused on the 11-24 age range when discussing young people. In our targeted engagement strategy in 2016, we spoke with nearly 100 young people who told us they had views and expressed experiences on health and social care, and we wanted to create a place where we could capture these voices and listen more closely to issues affecting young people in Luton. This forum is one of possible two or a few where we hope to speak with young people and gather more feedback on how they feel health and social care services are running in Luton.

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2. Overall feedback (summary to date) We spoke with nearly 100 young people in 2016 who highlighted the following areas of concern on health and social care: GP s Access to services negative, treatment and care good Mental Health services Treatment and care, Dignity and Staff negatively, referrals good Dentists Access negative, Treatment good Hospital Access negative, Treatment and care positive 2016 Feedback: from Tokko and Youthscape (Sept-Dec 2016) Speaking to nearly 100 people showed trends in areas that young people felt overall were affecting their experiences with health and social care in Luton. Some of the feedback we received was positive, in particular around areas such as the treatment and care received, both from GP s and the hospital. Areas around access and waiting times were marked as more negative experiences. The mental health provider, East London Foundation Trust (ELFT) particularly was remarked on negatively, specifically in areas such as CAMHS and psychiatry run by the provider. Areas such as dignity and respect, facilities and staff have all been highlighted mainly as negative experiences and the main positive feedback was around referrals into other services or into the ELFT services. Overall Feedback from Young People (2016) GP's Hospital Mental Health (ELFT) Dentists

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Healthwatch Luton Youth Forum 1 3 Youth Forum May 2017 Feedback Snapshot view Main Areas of HEALTH discussed Mental Health Services (Promotion and Access) Sexual Health (Stigma and Awareness) Waiting Times (Access to Gp's) Other (L&D Physio, Dentists, Self Harm UK) Main Areas of SOCIAL CARE discussed Support for young people (particularly young carers, those with learning difficulties etc) Integration of services (Schools linked to social care) Promotion of services available to young people (e.g. more than Directory) Other (Positive feedback on Tokko, Youthscape, Healthwatch etc)

Healthwatch Luton partnered with TOKKO Youthspace in May 2017. We invited young people from all over the town to join us at our first Youth Forum, a place where people would be able to feedback to us regarding their health and social care experiences. We wanted to create an agenda that would allow young people an environment where they felt they could inform us of services they had issues or concerns on, or feedback we could take to providers that had not been heard. We started the day with introductions and definitions of health and social care. We were joined by MIND (Steve McNay) for support, as a lot of the feedback we had gathered prior to the Youth Forum had elements around mental health, and Healthwatch Luton wanted to provide expertise on the day should it be needed. A representative from Luton and Dunstable Hospital also joined us, although this Forum was not targeted at Providers and was aimed at Young people. We outlined the health and social care services available in Luton under health and social care, and provided a non-exhaustive list of services available in the town. We ran a short health and social care myth busting quiz, and then asked them to feedback on health and social care services. We wanted to capture their feedback on services they had encountered or new of, and how they felt they could be improved. 5 young people kindly took time out of their half term and studies and work to take part, and the main themes discussed were: More awareness of services for young people More support for young people accessing services Long waiting times for services (such as GP s or referals such as with Edwin Lobo or Mental Health counselling services) Lack of integreation of services, particularly with third sector Stigma around sexual health Demographics of attendees White British British Bengali Black African British Asian Pakistani

Healthwatch Luton Youth Forum 1 More in depth feedback on health and social care services in Luton 16

Healthwatch Luton Youth Forum 1 4 HEALTH Feedback They discussed how more promotion of services would be helpful understanding that the long waiting lists many encountered when trying to access these services were already experiencing would increase. They felt concern around the waiting lists, and thought more communications would benefit understanding of service provision. Sexual Health: 5 18 Waiting Times: There were discussions regarding waiting times, particularly around GP access, and around referral services such as to the Edwin Lobo center. One young person had waited up to 2 hours for a confirmed doctor s appointment at his GP with little understanding or apology from the surgery. The young people we spoke with also discussed rushed appointments with services, particularly GP s once an appointment had been agreed. It was discussed around time frames GP s must adhere to, and how these time frames don t provide opportunity to discuss issues thoroughly. Many of the young people mentioned how stigma was still faced around sexual health, and thought more integration of services within schools and community organizations would allow young people to access more information on sexual health. Many felt the schools dealt with this area ineptly and suggested more joined up working with health bodies and education bodies would address children not being able to access up to date knowledge, and resources. OTHER: Dentists were discussed by a couple of those in attendance, with mainly positive feedback. It was noted however that one young person who liked her dentist no longer attended check ups since she has started to pay for the service. As an apprentice no longer in full time education, she struggled to juggle costs of living and her dental care. Other areas of positive feedback were with the Luton and Dunstable Hospital s Physio department, and Self Harm UK were mentioned as supportive and helpful. Mental Health Services: The young people we spoke with discussed in depth areas such as CAMHS, and counselling services available to them, as well as referrals to and from the mental health provider. 17

Toolkit and resources guide 5 SOCIAL CARE Feedback One person discussed social prescription, and how in theory it would and could work well for young people but suggested using schools to prescribe and refer to the system would aid young people. Many young people may not address some issues with their GP and yet if they felt there was a process and culture from a young age to be able to access from a school setting, that this would be beneficial. Promotion of services: Support for young people: In particular, it was discussed that more support was needed for young people, mainly young carers who felt they struffled with knowing where to go for support. Young people with learning difficulties and disabilities also stated they struggled to understand what support was available to them in the town. It was recommended that the possibility of having more support activities set up for young people with specific needs, such as caring or with difficulties, be invested in, and promoted to young people. Integration of services: Many of the young people were unaware of the social care services available in Luton, - and discussed about how more promotion on the services available would be beneficial. An up to date, quick way for young people to know about events, health and social care issues and where to access resources were all mentioned. OTHER: The young people mainly mentioned third sector (charities and not for profits) as social care services working well, such as TOKKO, Youthscape, LTFC Community Coaching and Healthwatch Luton. The young people we spoke with discussed in depth about how education services, particularly at a young age (such as primary and early secondary school) were integrated with health and social care, using them as a vicinity to educate young people better.

What to do next: Everyone would attended the Forum found the day informative, friendly and were able to express their opinions (all agreed, or agreed a lot). They all hoped for a further Youth Forum to be run, and they all learned something about health and social care from the event. All of them felt it was well organized but most of them did not know what to expect. Other comments from the Forum were: It was really interesting and I learned a lot about the differences between health and social care. It was very enjoyable and interesting More young people to be involved less professional! At the end of the Forum we asked the young people to complete an action plan on what they would like to see happen next and whether they would take part. The main findings are in the next coloum highlighted. A full report of all the findings from all the young people we speak with in 2016-2017 will be compiled at the end of 2017 with an overall plan of how to help young people feedback on their experiences of health and social care and how they can influence service provision by having their voices heard. Suggestions To run further Youth Forums (Some suggested within TOKKO, potentially every half term on health and social care issues. Some suggested using other providers to capture a wider youth voice) To run more targeted events on health and social care (relevant to young people. Some suggest a Youth Conference bringing together many providers in one place for young people to access) To promote health and social care services in Luton more (suggestions of a young person s website or app for young people to local services available in Luton) Healthwatch Luton would like to run more Forums, and will be running a further Forum later in the year in the Sixth Form college. Once we have gathered this feedback, and understood the trends across all the feedback gathered, Healthwatch Luton will look to address where they can prioritise assisting young people have their voices heard. From the feedback gathered so far, we understand there is a need for young people to understand and access health and social care better than they currently are. Whilst we understand funding issues regarding health and social care, we believe young people should and need more support around health and social care in Luton.

In particular Healthwatch Luton would like to thank TOKKO Youth space for hosting our first Youth Forum, specifically to Anna Butterworth from TOKKO and Andy Calvert. Healthwatch Luton 102 Hitchin Road Luton, LU2 0ES Tel 01582 817 060 info@healthwatchluton.co.uk www.healthwatchluton.co.uk