In 2019 Healthwatch Calderdale embarked on a project to collect the experiences of children and young people on health and social care. The purpose of our project is to discover what matters most to children and young people in terms of health and social care.
We want children and young people to know that their voice is important – we will report on their experiences, sharing what they have told us with the people with the power to make change happen. We hope that these voices can be used to help shape the future of health and social care.
Our first project focused on the experiences of people using Child and Adolescent Mental Health Services in Calderdale.
We have heard from a number of parents and carers of children displaying signs of autistic spectrum condition (ASC), attention deficit hyperactivity disorder (ADHD), or attention deficit disorder (ADD) regarding their children’s experience of Child and Adolescent Mental Health Services (CAMHS). We’ve helped these families with their CAMHS concerns on a one-to-one basis, working with them to help them get the best outcome for their child. Now we’re hoping to bring together all these voices, and others to ensure they are heard and to try and make a positive difference for all.
We hope to highlight what these families face and then put forward practical and achievable ideas to address the issues identified.
Our engagement work was completed during summer and early autumn 2019 and the report was presented to health commissioners and providers in winter 2019.
Our findings show:
- Some children are missing out or falling behind in their education because of the lack of support available while they wait for assessments under CAMHS umbrella services.
- Patients continue to face long waiting times.
- Those with mental health needs and ASC are left without the support they need for both conditions, due to omissions in mental health care for people with ASC.
- Carers experience a lack of support.
- Parents cite communication concerns when dealing with CAMHS, including calls not being returned.
- The health and employment of parents/carers was negatively impacted because of dealing with their child’s health and care needs and lack of support.
- All of the above gives people a negative perception of the CAMHS service locally.
December 2019: provider response:
On behalf all members of the Open Minds Partnership, I would like to thank Healthwatch Calderdale for their report on Feedback from Calderdale Child and Adolescent Mental Health Service (CAMHS) from families of children displaying signs of autistic spectrum condition (ASC), attention deficit hyperactivity disorder (ADHD), or attention deficit disorder (ADD).
The organisations who form the Calderdale Open Minds Partnership are giving the views and feedback gathered by Healthwatch Calderdale and presented in this report their full attention. We would like to invite representatives from your organisation to our next Open Minds Partnership Steering Group meeting on Thursday 16 January 2020 at the NHS Calderdale CCG office
s, to discuss its content and how we can work together to improve peoples’ experience.
While there is still much to be done to improve emotional health and wellbeing services of young people in Calderdale, the Open Mind Partnership felt that this report does not give a wholly accurate picture of current services and system transformation over the past 12 months. The Partnership felt it would have been a good opportunity for this survey to have been coproduced, encouraging feedback on both the achievements made as well as identifying improvements. It is helpful and powerful to be able to share positive feedback as well as areas for improvement with the workforce and the system who also provide vital support to children and young people.
Following our telephone conversation yesterday, The Open Minds Partnership will respond to the recommendations with a full, transparent and honest response, hopefully by Thursday 9 January, paving the way for further discussion with yourselves at the Open Minds Partnership Steering Group meeting the following week.
January 2020: Response from Calder Valley MP Craig Whittaker:
Craig has had sight of the report and has asked me to come back to you to advise that he shall raise the report and its findings at the earliest and best opportunity.
Thank you again for bringing this information to Craig’s attention.
January 2020: Full response from the Open Minds Partnership.
The Open Mind Partnership (OMP) which brings together NHS Calderdale Clinical Commissioning Group; Calderdale Council; Northpoint Wellbeing Ltd; South West Yorkshire Partnership NHS Foundation; Kooth (online counselling) has worked together to provide feedback to our report into CAMHS where ASD/ADD/ADHD is concerned.
February 2020: Support group launched for parents with children on ASD waiting list in Calderdale
Unique Ways have launched coffee mornings and a support group for parents with children waiting to be assessed for autism. Click here for further details.
February 2020: Update from Northpoint on support and advice for parents/carers
Northpoint (previously known as Tier 2) which is part of the Open Minds Partnership has updated their website with more information for parents/carers looking for information about their child’s needs where autism and mental health is concerned.
You can click here for the latest on support and information for families of school aged children on the ASD waiting list.
There is also a self-referral facility into the service. It can be found here: https://calderdalecamhs.org.uk/how-to-refer/
Northpoint also say parents/carers are also welcome to phone the First Point of Contact on 01422 300 001.
March 2020: update at Calderdale Council Scrutiny
On March 3 Healthwatch Calderdale’s report into children and young people seeking support for ASC went before Calderdale Council’s Scrutiny Panel for Children and Young People.
You can read the council reports here: https://www.calderdale.gov.uk/council/councillors/councilmeetings/agendas-detail.jsp?meeting=27821
At the meeting the chair, Clr Colin Raistrick and fellow Scrutiny members, discussed the report and were able to ask questions of those attending, including staff from Healthwatch Calderdale, Calderdale Clinical Commissioning Group, Northpoint and South West Yorkshire Foundation Partnership, the latter three are members of the Open Minds Partnership in Calderdale.
At the Scrutiny meeting members were told the OMP was on track to reduce waiting times to less than 12 months. In the summer they will be merging the Autism and ADHD pathway so there will be just one neurological development assessment pathway.
Councillors were told the self-referrals was a success and a new first point of contact practitioner was working well with families.
Healthwatch Calderdale would like to thank the Scrutiny members for allowing our report to be discussed in this way and we will continue working with the OMP and Council on this subject.
March 2020: Open Minds Partnership FAQs
The Open Minds Partnership (OMP) have released an updated Frequently Asked Questions (FAQs) guide which has been done with the help of parents and children and young people. Click here to read the FAQs.
March 2020: OMP services during Covid-19
Calderdale’s Open Minds Partnership has updated its website with new information about how the service is operating during the Covid-19 pandemic.
In Calderdale, parents and carers can still phone the First Point of Contact with concerns and they can still refer via the CAMHS website: https://calderdalecamhs.org.uk/
Young people can also sign up for Silvercloud, the online service that is designed to help with anxieties.
Kooth are offered online discussions, advice and guidance here: www.kooth.com
There’s also this video which tells you more about how to access the service: https://vimeo.com/318731977/a9f32c87de .