Making the Disabled Children’s Charter a health priority

As you are hopefully aware, the beginning of April saw a massive shake-up in the NHS and the creation of GP-led Clinical Commissioning Groups as well as Health and Wellbeing Boards.

The Health and Wellbeing Boards bring together key leaders from the local health and care system to develop a shared understanding of the health and care needs of their local communities and how to address them. They are intended to drive local integration between health, social care and wider partners and reduce health inequalities.

EDCM logoBut with the many priorities that these new bodies will have, the charities Every Disabled Child Matters and The Children’s Trust, based at Tadworth in Surrey have launched our Disabled Children’s Charter for Health and Wellbeing Boards to ensure that children with special needs, health conditions and disabilities stay at the top of the agenda.

Because these children often need to access services from across the spectrum of health and care and specialist education services, they are especially vulnerable to suffer the effects of a lack of integration and cooperation between the providers of these services. This can lead to their needs not being adequately met or their families having additional financial burdens placed upon them.

charter_coverThis is why these two fantastic charities are calling on all the England’s Health & Wellbeing boards to sign up to the following seven key pledges:

By [date within 1 year of signing the Charter] our Health and Wellbeing Board will provide evidence that:

1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs.

2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board.

4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account.

5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people.

6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners.

7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

CTrustThe Charter is accompanied by a document: Why sign the Charter? which explains the value of the Charter commitments with reference to Health and Wellbeing Board statutory duties and powers, and signposts Health and Wellbeing Boards to resources that will help them fulfil each commitment. It also includes a guide to the evidence that Health and Wellbeing Boards could provide to demonstrate that they have met the Charter commitments.

The Government recently responded to the report of the Children and Young People’s Health Outcomes Forum by releasing ‘Better Health Outcomes for Children and Young People: Our Pledge’. This set out the shared ambitions for all agencies in the new health system to improve the health outcomes of children and young people in England. This Charter is aimed at providing a tool for Health and Wellbeing Boards to deliver on these ambitions for a key group of its local population.

The EDCM & The Children’s Trust have jointly sent the Disabled Children’s Charter to every Health and Wellbeing Board in England and asked the Chair to sign it.

You can support their campaign by sending an email to your Health and Wellbeing Board Chair and urging them to sign it too. Find your local Health & Wellbeing Board here or just search for your top-level Local Authority where you live and “Health & wellbeing board”

Looking at our own HWB in Surrey, the board does not have any representatives from the voluntary/community/minority services or any parent representation. I find this something of an anomaly in these new days of transparency and co-production.

What does your local HWB board look like? Does it give you confidence that it will sign up to and can deliver the Disabled Children’s Charter?

Download the Disabled Childrens Charter for HWB

Download the “Why sign the disabled children’s charter for health and wellbeing boards” document here

Real tips from real carers – a new tool from NetBuddy and NHS Carers Direct

Netbuddy has been working with NHS Carers Direct to pass on practical advice, tips and ideas from carers of people with learning disabilities to other carers.

‘Real tips from real carers is a new tool created by NHS Carers Direct and Netbuddy. It offers a selection of tips submitted by carers under four separate headings – Communication, Healthcare, Personal Hygiene, Behaviour and Routine.

The tool is live on the Carers Direct website and a version of the tool is also available for people to put on their own websites.

Netbuddy director, Deborah Gundle said: “We are so pleased to be working with Carers Direct to share these great practical ideas from people with everyday experience of caring for people with learning disabilities. Working in partnership with other organisations like Carers Direct allows us to reach more carers who can benefit from Netbuddy. We really hope more people will come forward and ask for the ‘Real tips from real carers’ widget on their website.”

Carers Direct website editor, Rob Finch, said: “The best advice comes from experience. Netbuddy is an amazing way for carers to get the benefit of the experience of others in similar situations.
“The tool that Netbuddy and Carers Direct has created is a really simple interactive gizmo that could help share dozens of these great tips with a wider audience of carers. We hope that these tips will make real changes the lives of carers – and the lives of those they support.”
You can find top tips for helping children with SEN and disabilities at the NetBuddy website. You can also offer your own tips as well!

Angel of Mercenary

Someone rear-ended my car yesterday while I was waiting in a queue of traffic. My 8 year old ASD son was in the car with me at the time; thankfully he wasn’t hurt, though I am now nursing whiplash.

We went to see the GP, the two of us, because although he seemed uninjured, it’s not easy to get him to explain where or if he is hurting and I thought that if I was in pain, he may very well be but not be reacting. After the collision, he just sat there in the car, staring straight ahead, saying nothing at all.

So what do you think the GP’s very first words were after we sat down and told him we had just had a car accident?

He said, “Well, you know I’m going to have to charge you for the consultation, because we count these as private appointments. It’ll probably be around £50, because if we get contacted by the insurance company it can create a lot of paperwork.”

So, to recap, I am sitting, in pain, in his office, with my autistic son, after a car crash that was no fault of our own and before asking us if we are hurt, he asks for payment. Does this mean if we can’t afford to pay he won’t examine us? I had said nothing about it being in case we wanted to make a claim, I just wanted to make sure that we did not need medical intervention.

Shocked at his attitude and by the collision itself, I burst into tears, told him his receptionist didn’t mention a charge (although she knew we had had an accident) and I didn’t care if he wanted to charge us for the consultation, I just wanted to make sure my son was okay.

He then, completely unembarrassed, explained that the reason they charged was, “firstly, because we’re entitled to, and secondly because we have to fill out forms.”

Entitled to? If I’m not mistaken, are we not entitled to a medical examination because he is a well-paid NHS doctor, we are on his list and that’s why we pay National Insurance?

He then magnanimously gave us both a perfunctory exam to check movement and said he wouldn’t charge us this time (as if we make a habit of having our car rear-ended) but he wouldn’t fill out any paperwork either (which I had not asked him to do in the first place as I hadn’t even considered injury compensation). He said if we wanted to make a claim we’d have to come back for another examination which he would charge us for.

Later, at home, I couldn’t work out if I was more upset by the accident or by the doctor. While I understand that insurance claims create paperwork, his attitude was appalling. He could perhaps have explained that should we wish to make an insurance claim there would then be a charge rather than giving the impression that if we wanted to be examined we would have to cough up.

Is this what our increasingly litigious society had created? Angels of Mercenary rather than angels of mercy? Doctors whose first thought is their wallets rather than their patients?

This same surgery has also recently introduced an automatic phone system on a local call charge. This means if you have an inclusive call package, you end up paying extra as it’s an 0845 number and then you have to wait in a queue, racking up the call cost before being told you’re 18th in line for a connection. Previously, you’d get a busy signal if it was engaged, hang up and try again in a few minutes which I think is infinitely preferable. I wonder who benefits from the revenue the lo-call number generates? Dr Mercenary, presumably.