Health special, plus camhs & other news

Health Special, plus CAMHS & other news 10th August 2017 Dear All Well…. We thought it would be a good idea to produce a special newsletter on Keeping Healthy. But… it’s harder than we thought.

What did we find out?

We (Caroline) did some secret shopping. We thought we’d just rock up to various local GPs and hospitals, and say ‘what’s it like for someone with SEN and/or D to come here?’ In the same way that someone with English as a second language might expect a translation service and so on. In fact, providing a translation service is much easier than adjustments for our children and young people!

There is no automatic service for people with SEND. The difference between speaking different languages, is not the same as the difference between visual impairment, Downs Syndrome, autism and limited mobility. But… our current research shows there is little understanding at the front line.

There are some things you can expect for those with learning disabilities A Health Passport for instance. NHS has a page on taking a young person with a learning disability to hospital: http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Going-into-hospital-withlearning-disability.aspx You can find the templates on this page on Easy Health: http://www.easyhealth.org.uk/listing/hospital-passports-%28leaflets%29 And Mencap has a brilliant guide on services for those with learning difficulties: https://www.mencap.org.uk/advice-and-support/health

But… where is the NHS page on disabilities?

Disabilities such as physical impairments (eg cerebal palsy) and sensory impairments (eg hearing or autism).

Here’s what we found out about what to expect for all children: • • • • • •

All children are supported and can be escorted by parent All children’s wards have higher levels of staff All children’s wards and appointment areas have toys TV etc Children’s A&E departments have higher staff numbers Parents stay with children All of the above helps all children deal with hospital experiences.

There is not much that’s specific to Special Education Needs and/or Disability.

Our children don't routinely get ‘reasonably adjusted’ treatments or appointments. There are some adjustments, listed below. And it all changes once child is over age 16 or 18 dependent on medical condition/need.

• • • •

Young people between the ages of 16-18 and with SEND can choose between paediatrics or adult services Learning disability nurses are made aware if a child with SEND is admitted on to a ward; but only if the parent (or the ISCD = integrated services for children with disabilities) informs the team SEN children/parent are normally offered a single side room on a main ward; IF a parent has raised awareness, and IF a room is available Health passports are available from the learning disability team but are not always referred to or requested by medical staff.

What do the hospitals say?

As of today, We’ve spoken to both Kingston and St. George’s hospitals. They are keen to work with SEND Family Voices on “smoothing the experience” and “raising awareness of what works” of a hospital visit (in-patient, or appointment) and especially the transition from children to adult services.

We are the planning stages at the moment; more information on how you can get involved soon.

For now, a question: Please send in your experiences of hospital visits.

We’re particularly keen on thinking constructively on what worked and what you would like to see.

We’re going with the premise that we need to tell the hospitals what they SHOULD do, not what they shouldn’t.

E-mail Caroline on: carolinen@sendfamilyvoices.org Or our general e-mail address of: sendfamilyvoices@outlook.com

More on Health…

Briefing to SEND Family Voices on Primary Care and people with learning disabilities “It is well known that people with learning disabilities have poorer health outcomes and experience health inequalities. There are many reason for this, some causes of learning disabilities have associated health problems, for example people with Downs Syndrome often have heart problems. Many people with learning disabilities do not follow healthy lifestyles, such as eating a balanced diet and regular exercise. This is often due to barriers to services and availability of easy read information.

A recent investigation called the Confidential Inquiries into the deaths of people with learning disabilities found that people died younger and often because of avoidable causes. So, working together with Community Paediatricians and GPs is important to ensure that health problems are identified and managed well.

GPs and people with learning disabilities There are two contracts that are important for people with learning disabilities.

1. Each GP practices has registers in place and these are called Quality Outcome Frameworks (or QOF). This is to identify people who have long term conditions such as diabetes for example. There is a register for people with learning disabilities. This is for all ages, so all children, young people and adults ought to be identified on these registers.

Why is this important?

Without a complete register of people with learning disabilities, practices may not be aware of the reasonable adjustments that may be needed for a child or young person with learning disabilities and their family, and of the help and support that may be useful to them.

Evidence suggests there are an increasing number of children with learning disabilities now surviving childhood, some of whom will have profound and multiple disabilities as they grow up. It also suggests that health services are often unprepared for these children and young people and the complexity of their problems.

A full register of people with learning disabilities will provide primary care practitioners with the first important building block in providing better quality and more appropriate services for this patient population.

2. Annual Health Checks for people with learning disabilities (14 upwards).

All people with learning disabilities from the age of 14 and who are known to the Local Authority because of their learning disability are eligible for an annual health check.

In Kingston, all GP practices have signed up to the contract but we know that few young people had annual health checks from their GP. Why is it important?

People with learning disabilities often have difficulty in recognising illness, communicating their needs and using health services. Research shows that regular health checks for people with learning disabilities often uncover treatable health conditions. Most of these are simple to treat and make the person feel better, while sometimes serious illnesses such as cancer are found at an early stage when they can be treated.

The Annual Health Check is also a chance for the person to get used to going to their GP practice, which reduces their fear of going at other times. As part of the health check, the practice should develop a health action plan that will tell the person the things that they could do.

Mencap developed a helpful guide to annual health checks https://www.mencap.org.uk/advice-and-support/health/dont-miss-out/dont-miss-outannual-health-checks What you can do now: If your son or daughter has a learning disability then make sure that you tell your GP. Ask them if he or she is on the register.

If your son or daughter is 14+ and has a EHCP or SEND statement with a primary need of moderate, severe or profound learning difficulties then he or she should receive an annual health check. Ask your practice about it. Make sure that your son or daughter attends with support (someone who knows them well and com prepared).“ ‌with thanks to S Braush, Kingston CCG.

CAMHS = Children & Adolescent Mental Health Services Meet the Commissioners - summary report - 8th August 2017 During summer term SEND Family Voices, alongside Richmond NAS, Express CIC, MeToo&Co and ADHD Richmond ran four events to discuss, with the Commissioners, the proposed changes to the eligibility criteria to the diagnostic pathway for autism. (The proposed changes were that only those with a pre-existing presenting mental health difficulty would be eligible for diagnosis – so much for early intervention!) This report summarises these four

meetings.

Thank you to all the parents and carers that came and gave their time to, and for, this work.

We can assure you it has made a difference – and will affect the ‘neurodevelopmental pathway’ in the future.

You can read the report on our website and we will be happy to send you a pdf version, and the (anonymised) raw data). http://www.sendfamilyvoices.org/booklets-research/

ISCD news & new AD for Health & Chief Nurse Heather Anderson has been covering the post of Head of ISCD (integrated services for children with disabilities) for some while; not an easy time, especially when it includes Inspections!

“I wanted to send a quick letter to update you about the Integrated Service for Children with Disabilities (ISCD) and changes to staffing structures.

Thank you for your support since last October whilst I have been Interim Head of Service.

From 1st August I returned to my substantive post as Health and Therapy Manager in the ISCD. Joan Myers started work in AfC on 31st July, as Associate Director for Health and Chief Nurse and will be leading on emotional health services, and the health and short breaks services in the integrated service for children with disabilities.

We have successfully completed the tender work for Kingston paediatric (paediatricians) services and Kingston Hospital Trust is the chosen provider from September 1st. We will be working with them over the next few weeks to prepare for the roll out of the new contract.

Please do let me know if you have any questions or feedback.

Best wishes, Heather Anderson” Health and Therapies Manager (ISCD) heather.anderson@achievingforchildren.org.uk

The new Local Offer Keep an eye on the Local Offer events pages – this is now the place to go for events. If you know of something, and it’s not there please let them know via the Contact Us page. https://www.afcinfo.org.uk/local_offer/events

Free Family Fun event …courtesy of Achieving for Children An event for children and young people with disabilities and their families. Come and join us for a fun filled afternoon with indoor and outdoor activities, including, climbing wall, pony rides, animals, face or hand painting, bouncy castle, biscuit decorating and lots more...

Sunday 3rd September - 1pm to 4pm The Moor Lane Centre, Chessington You will need to print out, or request, a paper invitation to gain entry.

For further information please contact David Arrow on 020 8547 6564 https://www.afcinfo.org.uk/local_offer/events/24652-family-fun-day-2017?date=2017-09-03

Council for Disabled Children – summer digest This digest is always worth taking the time to skim and pick up articles of personal interest.

The full digest is here, and we’ve picked out some highlights below. https://councilfordisabledchildren.org.uk/help-resources/resources/summer-2017-digest-outnow?mc_cid=33351ee94a&mc_eid=7dbeace220 “There’s always a lot going on here at CDC but some pieces of work really are vital and will hopefully make your life much easier.”

Guides for co-ordinating all aspects of the EHC Plans At the core of the Children and Families Act is the coordination and integration of support for children and young people with special educational needs to improve their outcomes. This includes their life outside of school and social inclusion.

These guides are for health teams, social care teams, disabled children’s teams and Special Educational Needs and Disability (SEND) teams, particularly those responsible for EHC needs assessments and planning. https://councilfordisabledchildren.org.uk/help-resources/resources/advice-educationhealth-and-care-plans

Admissions This briefing provides information about school admissions arrangements. It is written for parents of disabled children and young people; parents of children and young people with special educational needs (SEN) and professionals advising parents including those in Information, Advice and Support Services (IASS).

The admissions system is designed to make sure that all children can exercise their right to education and that they all have the same opportunity to attend a good school that makes appropriate provision for them. https://councilfordisabledchildren.org.uk/help-resources/resources/school-admissionsbriefing

And two short films Here is the introductory page, with the links embedded: https://councilfordisabledchildren.org.uk/help-resources/resources/two-new-shortanimations-aimed-parents-help-explain-ehcp-process-and-person-centred-connection What is an EHCP and who is it for For those who attend special schools or specialist colleges (3.35 minutes) https://www.youtube.com/watch?v=ughC-a5RhAc&feature=youtu.be The EHCP and the person-centred connection (4.21minutes) https://www.youtube.com/watch?v=8ElkB6NzWi8&feature=youtu.be

New Case Law from S Broach – from page 11 Our series of case law reviews on judgements relating to special educational needs and disability continues with three case law review summaries compiled by barrister Steve Broach from Monckton Chambers.

The cases are all from the Upper Tribunal and are listed with summaries below. To read the full accounts including advice on what the judgements mean to children, families and local authorities, click on the link at the end of each summary review.

Resources New resources – from page 19 – including links to a report on unlawful exclusions for those with SEN (too many!) and that nationally half of exclusions are for those with SEND Disabled children, special educational needs and exclusions Send Education Consortium SEC believes it is not acceptable that: • Children with SEN account for over half of all permanent exclusions and fixed period exclusions; • Children on SEN support are over 7 times more likely to receive a permanent exclusion than children with no SENi.

More summer reading From Special Needs Jungle…

“These days, there is an entire community of SEND parent bloggers who are talking about their experiences in blogs large and small… They all started out wanting the same thing: to highlight their experience and hope it may help another parent who was feeling isolated or maybe even change the system, just a little bit.

This August, Special Needs Jungle have decided to celebrate a few of these new SEND torch-bearers. Some may already be in your list of favourite reads, others will be new to you.” https://www.specialneedsjungle.com/send-blogger-showcase-itmustbemum-the-longchain/ As ever, if you have any queries at all, please ask and we'll always do our best to find an answer.

With best wishes, Caroline North (for Kingston) and Romany (for Richmond) Phone: 07469 746 145 www.sendfamilyvoices.org