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Out of the Box
 

ggblog44

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Joined: 2016-04-21 Posts: 2
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Out of the Box – Campaigning for Co-ordinated Care for Children with Undiagnosed Genetic Conditions

As GG’s mother, I have spent the past 5+ years navigating my way around the services provided by local authorities, the Community NHS and the DWP. Firstly, I would like to say how grateful we are for the services provided, we benefit from some good services, an excellent school, a great transport company, the support of therapists and a fab school nurse.

However, accessing this support has been a significant challenge – you have to fight every step of the way to secure the support your child needs. Excluding medical involvement, there are no less than 24 touch points for different services.

For each of the 24 touch points, there is a separate assessment process. Each assessment is time consuming, intensive and requires us to continually ‘prove’ that our child is disabled enough to meet the criteria. For the service providers, it means duplication, repetition and specialist resources focused on assessment rather than provision of the service.

Although in the end we have mostly been successful in securing the support needed, the journey has been tough. As GG remains undiagnosed, this adds extra complexity to the processes. On most forms there is a small box marked ‘please describe medical condition’. This is not straightforward. This is a very long list.

Disability Living Allowance awards are generally only made one year at a time as no diagnosis results in no firm prognosis. Despite little changing year on year, we have to repeat the 42 page form with 10+ appendices. This year it took me more than 6 hours in total In the UK there are 6000 children born each year without a diagnosis, none of whom fit in a box.

My vision for the future is of one combined specialist assessment team. They could provide the focal point for the child and their family, assessing their needs across a range of different services – from School Places to Blue Badges, Respite Care to Housing Adaptations. This would allow the delivery teams to focus on provision of services – which I know from regular inter-actions is what they want to do.

There would be multiple benefits to this approach. In this world, diagnosis or no diagnosis, the teams would focus on the needs of the child, not what we are able to write in a box. Being undiagnosed would no longer be a barrier.

For the family it would also remove the continual assessments and allow for fair and consistent decisions. From a funding perspective, this would eliminate a lot of waste in the current system and allow funds to be spent on delivering services, rather than cumbersome and costly assessment and appeal processes.

I appreciate such change is significant and I am presenting a simplistic view of a cross authority / cross team approach. However, I passionately believe that in combining resources – in this case for assessment purposes – we could achieve better outcomes. In the short term, simple changes could reduce wastage. For example, a child allocated a place at a Special Needs School will have a complex disability so it would appear logical that they will require a Blue Badge, transport to school and access to respite services. I am sure this co-ordinated approach would benefit families and service providers.

I will shortly be launching my campaign ‘Out of the Box’ to improve the co-ordination of care for disabled children and specifically to remove the barriers for those who do not have a diagnosis. We should not be penalised for not fitting in a box. By thinking out of the box, some small changes could have a big impact.

http://wp.me/p58LFk-1L

26 April 2016 01:55 AM # 1

Healing Heart

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Joined: 2014-10-10 Posts: 701
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Great campaign!  Sending biggest and best wishes for a huge success!

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26 April 2016 09:12 PM # 2

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Wow - sounds like a really interesting campaign. My son is undiagnosed so I’d love to get involved. Have you been in touch with SWAN UK and have you heard about the Roald Dahl Undiagnosed Nurse that will be based at Great Ormond Street?

26 April 2016 09:35 PM # 3

ggblog44

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Joined: 2016-04-21 Posts: 2
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AlwaysRunning - 26 April 2016 09:12 PM

Wow - sounds like a really interesting campaign. My son is undiagnosed so I’d love to get involved. Have you been in touch with SWAN UK and have you heard about the Roald Dahl Undiagnosed Nurse that will be based at Great Ormond Street?

Hi, yes I am part of the Swan group and the Roald Dahl nurse is an amazing step forward. It was this progress that gave me the inspiration for #outofthebox which is focusing on some of the non medical services that need better co-ordination. Thanks for the response, your support is appreciated!

03 May 2016 03:45 PM # 4

LauraFirefly

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Joined: 2016-03-03 Posts: 2
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Hello ggblog,

I work for Firefly - this sounds like a great campaign and we would be happy to support it by posting and sharing any blogs you have. If you wish, you can email them to us at .(JavaScript must be enabled to view this email address),

Thanks,
Laura

05 July 2016 04:22 PM # 5

AlwaysRunning

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Joined: 2014-10-10 Posts: 270
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Really interesting article about the campaign - I really hope it gets some wings. It is desperately needed.

21 September 2016 08:27 AM # 6

Firefly Louise

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Joined: 2016-04-06 Posts: 3
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Great campaign, best of luck x

02 October 2016 08:21 AM # 7

Becca T

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Joined: 2015-04-26 Posts: 53
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How are you getting on with your campaign? Great idea & will be invaluable to many families!! Wishing you all the best x

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