Moving from children’s to Adult ServicesChecking how well this was workingfor young people with high health needs.

This is an EasyRead of:“From the pond into the sea”Children’s transition to adult healthservices

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What’s in this paper?

This EasyRead paper is written by CQC, theCare Quality Commission.

We check health and social care services.

We wanted to look at how services wereworking for young people when they grewup and moved to Adult Services.

This is called transition.

In this paper we tell you about what wefound out and what needs to be done tomake transition better.

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The Issue

Growing up is difficult enough.

It’s even more difficult when you have lotsof health needs and you need to changeservices at a time when lots of otherthings are changing too.

To find out more about how transition wasworking for people and their families weasked 180 people how it was going forthem.

There are lots of guides saying how to doit well.

But lots of people said they were notfollowed.

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People had problems with:

· not enough information

· gaps in support

· services that just stopped or did notmeet their needs.

We think it is simply not good enough tohave services arguing about who shouldbe giving a service when people are leftwith nothing!

One care worker said a service wasworking well, but that was only becausethe person’s mother did the job for theprofessionals.

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Peter’s Story

The story of what happened to Peter is thesame for lots of people.

Peter has high needs, he is blind, he can’tspeak and has a physical disability.

His family organise their lives aroundmeeting his needs.

Peter liked school and being with others,he talks in his own way.

He needs health support with things likefeeding.

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He sometimes needs emergency supportwith his breathing.

He used to have his services sorted out bya doctor who was a children’s expert,which worked well.

When he was 14 his parents got a letterthat said transition should be a part of hisnext review.

They did not get any more informationabout what that meant.

Peter was forgotten about because hewent to a school outside his area.

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His parents tried to organise meetingswith professionals but things still wentwrong.

He had to move his care to an adulthospital he didn’t know, after he had anoperation.

Peter had no one to organise his servicesand support properly.

His parents are trying to work with hisdoctor to find a local place he can go tonow.

Peter’s story shows all the things thatshould not be happening.

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What worked well?

We did hear about some good servicesand very good workers.

These were usually special health servicesthat followed the guides about how towork well.

Some good things were:

· having the same staff who knewpeople and their problems

· having clinics for young people aged10 – 19

· staff talking well with young peopleand their parents

· being given good information.

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What didn’t work well?

1. Planning was not good enough

Many people did not get good planning orinformation.

People did not know about the changesthat would be happening.

Some professionals said they did not knowhow to do transition planning properly.

Sometimes an important service juststopped completely at 16.

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2. Plans were not made at all

8 out of 10 young people we talked to didnot have their health needs included intheir transition plan.

It is clear in the guide that people shouldhave a plan that includes their healthneeds.

We were told they were not done because:

· health and social care workingtogether didn’t always work well andthe planning was left too late

· there just was not an adult servicedoing the same job as the children’sservice

· professionals did not always know whoshould do what

· adult and children’s services did nottalk to each other enough.

Plan

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3. Health Passports were not used

Health Passports are a way of peoplekeeping their own health informationtogether.

That way it can be shown to anyone whoneeds to see it.

Some people did have Health Passports,but lots did not.

People said it was very annoying having totell lots of new professionals the samethings about health needs.

Everyone liked Health Passports but theywere still not used.

Everyone said that health informationneeded to go onto computers so everyonecould see it when they needed to.

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4. There was no one professional incharge of supporting a personthrough to adult services

Half of the families we spoke to said theydid not have a person in charge of theirmove to adult services.

7 out of 10 professionals agreed.People said the job was left to parents.

This was because:

· professionals were not sure whoshould do it

· adult services are not paid to getinvolved with people under 18

· GPs (local doctors) are not involved inthe care of children with high healthneeds, but they are expected to whenthey are 18.

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5. Adult services were not right foryoung people

Some adult services said they did notknow how to support some young peoplewhen they moved from children’s services.

Some community nurses who look afteradults could not do the same jobs aschildren’s nurses.

Some parents had seen children’s andadult services arguing in A&E about thebest place for the young person to go to.

6. Carers needs were not checked

Health staff did not look enough at theneeds of parents as carers.

Some children’s nurses said they had nothad training on the needs of carers or themoney and time to do it.

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7. Services did not agree who shouldpay for what people needed

Because sometimes services could notagree who was paying, some youngpeople were left without:

· equipment

· services

· respite care

· the other things they needed.

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Services told us that:

· it was not clear who should pay

· professionals, who did not know theyoung person, did the check to seewhat they needed and left importantthings out

· other important information was leftout

· making decisions took longer

· having a personal budget left somepeople feeling they were just left to geton with it themselves

?!

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· even if you did have the money it wasno use if there were no services to buywith it.

It was expected that staff in children’sand adult services should work together.

Lots of staff did do a good job, but notwhen it came to transition.

If transition is not done properly peoplecan get very worried about who is going tohelp them and give them the care theyneed.

Sometimes important care just stops orthey can’t get equipment they need untilthe money is sorted out.

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What needs to be done?

We did think about whether there shouldbe a special service just for peoplebetween 14 and 25.

This does work well in some areas, butother services work well if they are able tochange to meet people’s needs.

We decided that what matters most ishaving services that work together to givethe care young people need.

We think there are 4 main things thatneed to change.

1.2.3.4.

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1. The people who buy services(commissioners) must listen andlearn from young people and theirfamilies.

Families know what works well and whenthings go wrong, they need to be listenedto.

With new laws on care coming out thetime is right to do the things they sayabout moving to adult services.

2. There are lots of examples andguides on how to do transitionwell. These need to be followed.

There is no excuse for not following theseguides.

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Every person over 14 with high healthneeds should have:

· a named professional in charge ofhelping move to adult services

· a good plan

· a Health Passport

· good services with no gaps

· training and advice about transition

Plan

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· advocates if needed

· respite or short breaks that meetpeople’s needs.

When we check services we will look athow well they are helping young peoplemove to adult services.

If they are doing it well we might givethem a better score.

If they are not doing it well we might givethem a lower score.

If they are very bad we might take actionto make them change.

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3. GPs must be involved earlier tohelp planning

A GP service is the only service that doesnot change in transition.

Over the next year GPs will be starting anew, better service to look after olderpeople with high health needs.

They should be thinking about doing thisfor younger people as well.

When we check GPs we will check to see ifthey are doing this.

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4. Growing up should be seen as animportant time by services

The people in charge of health servicesshould be making sure services work wellfor young people.

They need to make sure:

· staff have the proper training

· services work together to plan what todo

· there is a manager whose job it is tomake sure services work well together.

Credits

This paper has been designed andproduced for the Care Quality Commissionby the EasyRead service at InspiredServices Publishing Ltd.Ref ISL 047/14. June 2014.

www.inspiredservices.org.uk

It meets the European EasyRead Standard.

Artwork includes material from theValuing People Clipart collectionAnd cannot be used anywhere elsewithout written permission from InspiredServices.

www.valuingpeopleclipart.org.uk