Introduction
Between 30 May and 24 July 2024, NHS Kent and Medway engaged for parents and carers of children and young people who use community health services. We did this via a survey, two online events and by asking community organisation who work with those less heard from to engage with their own stakeholders and feedback to us.
- We had 39 children’s survey responses
- Seven community organisations engaged with 131 children, young people, parents and carers.
- 29 people attended events
The following report summarises what we heard from all of those channels.
What we heard
Across all the engagement we heard the following themes.
What is good about services that should be shared?
- Friendly / caring staff
- Satisfaction with services are good when they reach them
- Multi-disciplinary teams are helpful and supportive
- Locations close to home
Across all methods satisfaction with services once being supported by them was relatively good. Staff supporting children and young people were seen to be caring and helpful with people saying they treated children equally and adapted to their needs. They also reported that many community locations were close to home and therefore simple to get to.
What should be improved
- Access / long waiting lists
- Communication – with patients and between services: information about services, support offer while on waiting lists
- Integration / Referrals/ fragmentation – support as young people are moving back and forth between services to avoid young people falling down gaps or getting lost in the system
- Training and education – for staff and parents/ carers
- Service flexibility
- Transport for when locations are further away
- Continuity of care – especially important when dealing with young people with complex needs
- Record sharing
- Workforce wellbeing
- Sustainable use of the voluntary / community sector
- Waiting times for breastfeeding support as time sensitive
The biggest theme for improvement was around access to services, both in terms of reducing waiting lists and also parents reporting they feel they have to ‘fight’ to access the right support at the right time for their children.
Fragmentation / integration also came through across all events, surveys and discussions. There was significant frustration around what was seen to be ‘service hand offs’, referrals where information didn’t follow the patient and people having to navigate a complex system without support. This was raised in relation to transition from children’s to adults’ services but not limited to that and was a concern whenever young people are moving between one service and another.
Children’s survey responses
39 people responded to the survey, 27 of whom resided in Medway and Swale with two in West Kent, four in East Kent and four in Dartford, Gravesham and Swanley.
The most used services respondents had used were community paediatrics and speech and language therapy.
The majority used services more than once while four were still waiting for an appointment following referral. 20 people said their experience was good / very good or excellent and seven reported a ‘poor’ experience.
Priorities identified in order of importance through the survey were,;
- Regardless of where I live in Kent and Medway I can easily get the same types of community health services
|
- My care is joined up with different professionals working closely together
|
- I don’t have to wait a long time to see someone when I need to
|
- I feel I am listened to, and I take part in the decisions about my care and support
|
- I can be treated or seen at home or in my neighbourhood
|
- I have a shared care record across services and one care plan for me
|
- When I need to move from children’s to adults services my care is unbroken and joined up
|
- I can manage my own health and well-being (with information and support from health and care services)
|
- There is a focus on preventing health problems before they start on providing support for isolated people and creating healthier communities
|
- I can use technology to seek advice and care at home, for instance using monitoring devices at home and video consulting
|
Children’s community organisations
Seven community organisations supported this work.
- 21 Together - a charity which supports children and young people aged 0-25 with Down’s Syndrome and their families in Kent
- Bump, Baby and Beyond - a charity that offers breastfeeding support within the Swale communities
- Diversity House - a charity who promotes community integration, re-integration, social inclusion and cohesion within the Swale and Kent communities
- Folkestone Nepalese Community – a non-profit organisation dedicated to assisting the local Nepalese and Gurkha veterans along with their families in Folkestone and nearby regions.
- Involve Kent - a large charity in Kent that helps people to live happier, healthier lives. We empower communities to live well by tackling the root cause of ill health, including isolation, loneliness, disadvantage and frailty.
- Medway Parent and Carer Forum - an independent, pan disability, parent led charity who work with (not for) the local authority, health and local services to improve services for children and young people with special educational needs and/or disabilities (SEND) and their families.
- Youth Ngage – an organisation delivering positive engagements for youth and young people between the ages of 11 – 21 around the North-Kent area
50% of those spoken to were young people, 41.7% were parents and 8.3% carers.
The key themes from the reports were:
- Waiting lists - waiting times are too long for referrals, reviews and assessments. This is important for breastfeeding support which is time sensitive.
- Communication – this includes information about services for parents and carers, letting parents and carers know about other support for them while on a waiting lists and staff speaking to other services
- Staff training and development – there is a need for more courses focused on diverse communities and supporting those families to meet their needs
- Service flexibility – services meeting the needs of the child, young person or family at appointments or in clinics by adapting the environment when needed
Across all organisations, the top four services participants mentioned were:
- Audiology
- Community paediatrics
- Children and young people speech and language therapy
- Occupational therapy
A lot of feedback was received around services for ADHD and autism specifically and these will be fed into improvement plans for those services.
Children’s listening events
Two online listening events were held with 38 people signed up and 29 people attending. Many of these people were staff working in services across providers, there was also representation from Medway Parents and Carers Together forum (PACT).
Alongside identifying caring and compassionate staff and effective MDT approaches as what works well, there was significant discussion around workforce and how to make sure staff wellbeing was improved and ‘burn out’ and stress reduced. There was a focus on creating positive work environments with sustainable workloads and ‘time to care’. Parental training also came out in both events, with additional guidance and support needed for parents to help them support their child’s wellbeing.
Inconsistency of services, complexity and fragmentation were raised as challenges that needed a system level approach.
Thank you for your involvement!
Introduction
Between 30 May and 24 July 2024, NHS Kent and Medway engaged for parents and carers of children and young people who use community health services. We did this via a survey, two online events and by asking community organisation who work with those less heard from to engage with their own stakeholders and feedback to us.
- We had 39 children’s survey responses
- Seven community organisations engaged with 131 children, young people, parents and carers.
- 29 people attended events
The following report summarises what we heard from all of those channels.
What we heard
Across all the engagement we heard the following themes.
What is good about services that should be shared?
- Friendly / caring staff
- Satisfaction with services are good when they reach them
- Multi-disciplinary teams are helpful and supportive
- Locations close to home
Across all methods satisfaction with services once being supported by them was relatively good. Staff supporting children and young people were seen to be caring and helpful with people saying they treated children equally and adapted to their needs. They also reported that many community locations were close to home and therefore simple to get to.
What should be improved
- Access / long waiting lists
- Communication – with patients and between services: information about services, support offer while on waiting lists
- Integration / Referrals/ fragmentation – support as young people are moving back and forth between services to avoid young people falling down gaps or getting lost in the system
- Training and education – for staff and parents/ carers
- Service flexibility
- Transport for when locations are further away
- Continuity of care – especially important when dealing with young people with complex needs
- Record sharing
- Workforce wellbeing
- Sustainable use of the voluntary / community sector
- Waiting times for breastfeeding support as time sensitive
The biggest theme for improvement was around access to services, both in terms of reducing waiting lists and also parents reporting they feel they have to ‘fight’ to access the right support at the right time for their children.
Fragmentation / integration also came through across all events, surveys and discussions. There was significant frustration around what was seen to be ‘service hand offs’, referrals where information didn’t follow the patient and people having to navigate a complex system without support. This was raised in relation to transition from children’s to adults’ services but not limited to that and was a concern whenever young people are moving between one service and another.
Children’s survey responses
39 people responded to the survey, 27 of whom resided in Medway and Swale with two in West Kent, four in East Kent and four in Dartford, Gravesham and Swanley.
The most used services respondents had used were community paediatrics and speech and language therapy.
The majority used services more than once while four were still waiting for an appointment following referral. 20 people said their experience was good / very good or excellent and seven reported a ‘poor’ experience.
Priorities identified in order of importance through the survey were,;
- Regardless of where I live in Kent and Medway I can easily get the same types of community health services
|
- My care is joined up with different professionals working closely together
|
- I don’t have to wait a long time to see someone when I need to
|
- I feel I am listened to, and I take part in the decisions about my care and support
|
- I can be treated or seen at home or in my neighbourhood
|
- I have a shared care record across services and one care plan for me
|
- When I need to move from children’s to adults services my care is unbroken and joined up
|
- I can manage my own health and well-being (with information and support from health and care services)
|
- There is a focus on preventing health problems before they start on providing support for isolated people and creating healthier communities
|
- I can use technology to seek advice and care at home, for instance using monitoring devices at home and video consulting
|
Children’s community organisations
Seven community organisations supported this work.
- 21 Together - a charity which supports children and young people aged 0-25 with Down’s Syndrome and their families in Kent
- Bump, Baby and Beyond - a charity that offers breastfeeding support within the Swale communities
- Diversity House - a charity who promotes community integration, re-integration, social inclusion and cohesion within the Swale and Kent communities
- Folkestone Nepalese Community – a non-profit organisation dedicated to assisting the local Nepalese and Gurkha veterans along with their families in Folkestone and nearby regions.
- Involve Kent - a large charity in Kent that helps people to live happier, healthier lives. We empower communities to live well by tackling the root cause of ill health, including isolation, loneliness, disadvantage and frailty.
- Medway Parent and Carer Forum - an independent, pan disability, parent led charity who work with (not for) the local authority, health and local services to improve services for children and young people with special educational needs and/or disabilities (SEND) and their families.
- Youth Ngage – an organisation delivering positive engagements for youth and young people between the ages of 11 – 21 around the North-Kent area
50% of those spoken to were young people, 41.7% were parents and 8.3% carers.
The key themes from the reports were:
- Waiting lists - waiting times are too long for referrals, reviews and assessments. This is important for breastfeeding support which is time sensitive.
- Communication – this includes information about services for parents and carers, letting parents and carers know about other support for them while on a waiting lists and staff speaking to other services
- Staff training and development – there is a need for more courses focused on diverse communities and supporting those families to meet their needs
- Service flexibility – services meeting the needs of the child, young person or family at appointments or in clinics by adapting the environment when needed
Across all organisations, the top four services participants mentioned were:
- Audiology
- Community paediatrics
- Children and young people speech and language therapy
- Occupational therapy
A lot of feedback was received around services for ADHD and autism specifically and these will be fed into improvement plans for those services.
Children’s listening events
Two online listening events were held with 38 people signed up and 29 people attending. Many of these people were staff working in services across providers, there was also representation from Medway Parents and Carers Together forum (PACT).
Alongside identifying caring and compassionate staff and effective MDT approaches as what works well, there was significant discussion around workforce and how to make sure staff wellbeing was improved and ‘burn out’ and stress reduced. There was a focus on creating positive work environments with sustainable workloads and ‘time to care’. Parental training also came out in both events, with additional guidance and support needed for parents to help them support their child’s wellbeing.
Inconsistency of services, complexity and fragmentation were raised as challenges that needed a system level approach.
Thank you for your involvement!
