I hope you all enjoy reading this blog…. watch this space as This Weeks blog will be about the difficulties of managing a healthy diabetic reading. It will be titled ” The not so sweet life” See you soon 😀
TRANSITION SPEECH – ANEELA
The transition team at The Big Discussion. Comment #TBD
Hello everyone, hope you all had a great lunch (I know I definitely did)
So this session is all about transition from paediatrics to adult health care.
Daunting, it’s a rather daunting and grim experience.
My friends – Thines, Charlotte and Terri –Ann will share with you some of our stories and I hope that you will find it informative and helpful.
So my name is Aneela, I am 17 years old and I have type 1 diabetes since January 2013.
I have been told on several occasions that I am going to be transitioned by the team that manages my condition for the last year but I suppose that I didn’t allow it to register because the truth is I don’t like the prospect of moving onto adult services.
Not because I don’t want to be an adult but because I have read several books about diabetes, transition and case studies of adult health care and I find the support given in adult health care terribly frightening mainly because you only see the endocrinologist twice yearly. That thought isn’t particularly because my pancreas and I are still in our honeymoon phase which means that my pancreas hasn’t retired completely from regulating my sugar levels.
What will happen when it does, will two appointments be enough to help me through that stage?
The other problems/fears I have with transition are:
- The loss of the relationship between doctors, nurses and dieticians – I have known them since last year and I can speak to them with ease, we can occasionally go off topic and talk about my work with IDF and Diabetes UK. Its not just about my healthcare its about life as a whole too. Will that be the case in Adult healthcare or will I be another number?
- The wide range of ages and loss of parental help –I am worried that in the unfortunate event of having to be hospitalised would I be surrounded by much older people than myself, will my mum be allowed to stay with me past visiting hours if I need her because currently in adult health care that is not allowed. We need an 18 – 25 ward so that this is possible and people don’t find it strange that our mothers and fathers are still a big part of our lives.
- What if a decision I have to make for myself is not the best or I don’t think I can decide… can my parents still have an input on my healthcare until I am happy to make my own decisions. I don’t feel comfortable yet to make my own decisions because I don’t think I’m quite an adult yet, I still need help. I ask my parents for help with Uni choices, I still ask mum to talk to the GP because I feel awkward and the gp doesn’t listen to me, I still ask mum to check on me at night. So why can I have help from my parents for most things but not be allowed the same help with my healthcare.
- The loss of key services – there are services that will no longer be available such as the emergency phone line to speak to a doctor at the hospital, the diabetic nurses role – will it still be the same – will they talk to me the way that paediatric nurses do, will the GP have more input in my healthcare, in which case it won’t work at all because I would not go to my appointments because the GP just doesn’t understand what I’m saying!
All of my fears and problems aside, I would like to raise something rather important about transition. I don’t think it should be called transition because it’s almost like you’re getting an unjustified upgrade from Facebook or twitter where you have a completely new interface and your lost trying to find the your friends in healthcare (your services). I would much rather it be called graduation. Graduation from being a child to an adult in different stages so that the leap to complete adult healthcare is reduced. So, as a graduating child I would like there to be an 18 – 25 ward.
TRANSITION SPEECH – TERI – ANNE
Hi my name is teri-ann and I’m 16 years old my experience of transition from child to adult services started when I was 15 years old. Due to various medical conditions I had a paediatrician that looked over my case and that I had meeting with every three months to check on progress. In October less than a month before my 16th birthday I went to see him and I was having some problems. I was also awaiting to go in for surgery later that month but due to my age my paediatrician discharged me without referring me on to anyone else to help deal and monitor these problems he just said If I had any more problems I would have to go to my gp. This was also a problem as specialists I see are in a different trust to my gp this means that my gp cannot see results from any scans or test the doctors have run unless they send letters to let my gp know the results. Also it means if I go into my local A&E my specialists can’t see any x-rays I’ve had making his job harder. Another example of transition I’ve had is the transition between my orthopaedic surgeons. This was an uncomfortable experience for me as I got transferred 3 times to different people care. This was after them spending months of not really knowing what to do then when I was referred my new surgeon won’t have read my notes or looked at my case meaning me have to explain everything to them again. Although my new surgeon sat down before coming into the room to see me to review my scan so when he came into the room he was already up to date and thinking of solutions which meant I finally manage to be booked in to have my first surgery thing was after over two and a half years of being passed around.
So now you’ve heard our stories and have the problems that may occur in your mind how about talking on your tables about the questions on the screen behind us.
TRANSITION SPEECH – Thines Ganeshmoorthay – Thines Talks http://thinesganeshamoorthy.weebly.com/
Transition to many patients is a daunting prospect. Having had a paediatrician over seeing all my care from the age of 13 the idea of suddenly not having that security and support was scary. Talking to other young people they seem to have similar views.
Over the last couple of years as I have been moving from paediatric to adult services I have experienced good and bad examples of transition. My main concern has been the lack of sign posting, just simply not knowing who I’d go to if I had a concern about a particular condition. Before my paediatrician would simply refer me onto the required specialist. Now I’m left with my GP, who doesn’t understand the level of care i require compared to my paediatrician. I am lucky to have a GP who has known me since birth but other young adult patients I have spoken to feel their GP doesn’t understand their needs at all.
Adult care in hospitals is obviously very different to paediatric. Even though I knew this, it was still very difficult to adapt, leaving me and other patients I’ve spoken to feeling quite stranded. Often the gap between adult referral and the first appointment can be months, again leaving young people feeling in limbo.
Taking to other young people many feel they get lost between paediatric and adult care. Specifically I have found rarer long term conditions are not followed up. I think is a real concern because if patients are not monitored their problems can escalate which is potentially dangerous for the patients health and the NHS. An example would be my experience with Tracheal Oesophageal Fistula. After the age of 5 1/2 I haven’t seen a TOF specialist. Reading the TOF magazine I have come to realise that there are complications with the condition later life and example being barrats oesophagus. However, I would have no idea who to contact if I had concerns. I feel my GP doesn’t have a enough specialised knowledge to recognise the signs of deterioration in my condition.
In contrast the Cleft lip and palate services have provided brilliant transition, I have been sign posted from birth to young adult life about what services I could access, what operations were open to me etc. The MDT of specialities are constantly in communication with each other, as a result I feel supported able to make informed decisions about my health. I understand the circumstances are unique but other areas could learn from the brilliant care they provide.
As a result of my experiences I would suggest some strategies to help the problem of transition. It would be useful for long-term conditions such as TOF to have a centre people could contact and ask where they could get specialised medical help if they were concerned. Sign posting is key for long term conditions!
It would also be a good idea if paediatricians started to prepare patients for transition from the age of 14/15 so that by the time they turn 18 they feel ready. Transition preparation should be unique to the patient and should empower them to take control of their health. Once patients feel in control they are more likely to respond to treatment and seek help when required.
Thank you very much for your time and we invite you to discuss the issue raised in our speeches.
TRANSITION SPEECH – Charlotte
Transition to many patients is a daunting prospect. Having had a paediatrician over seeing all my care from the age of 13 the idea of suddenly not having that security and support was scary. Talking to other young people they seem to have similar views.
Over the last couple of years as I have been moving from paediatric to adult services I have experienced good and bad examples of transition. My main concern has been the lack of sign posting, just simply not knowing who I’d go to if I had a concern about a particular condition. Before my paediatrician would simply refer me on. Now I’m left with my GP, who I feel doesn’t know me well enough to feel as supported as I did before. I am lucky to have a GP who has known me since birth but other young adult patients I have spoken to feel their GP doesn’t give them the support they feel their complex needs require.
Adult care in hospitals is obviously very different to paediatric. Even though I knew this, it was still very difficult to adapt, leaving me and other patients I’ve spoken to feeling quite stranded.
I have a friend who accesses mental health services and she told me that at 18 she was told she would have to go onto an adult mental health ward. She had huge concerns over this and was much more reluctant to seek help as she didn’t want to have to go onto an adult ward. For other young adults this is a concern and I think efforts should be made to make wards more young adult friendly so they feel they are being adequately provided for.
Taking to other young people many feel they get lost between paediatric and adult care. Specifically I have found rarer long term conditions are not followed up. I feel this should be a real concern, because if patients are not monitored their problems can escalate which is not good for the patients or the NHS. An example would be my experience with TOF. After around the age of 5/6 I haven’t seen a TOF specialist. Reading the TOF magazine I have seen that there are complications with TOF later life and example being barrats oespahgus. But I would have no idea where to go if I had concerns, which to me is very worrying.
In contrast the Cleft lip and palate services have provided brilliant transition, I have been sign posted from birth to young adult life about what services I could access, what operations were open to me etc. The MDT of specialities is constantly in communication with each other, as a result I feel supported able to make informed decisions about my health. I understand the circumstances are unique but other areas could learn from the brilliant care they provide.
As a result of my experiences I would suggest some strategies to help the problem of transition. It would be useful for long-term conditions such as TOF to have a centre where people could contact and ask where they could get medical help from if they were concerned. Sign posting is key for long term conditions! It would also be a good idea if
paediatricians started to prepare patients for transition so that by the time they turn 18 they feel ready.
Technology could be used to empower young people e.g. an app to make appointments/ and app about transition info.
Government
* Spend some money on improving transition because I think it would improve over all care.
NHS England
* Commission some transition services inclu
* A clinical lead or designated person to over see transitional care
* Commission a linking centre for people with congenital and long term conditions.
*
Hospitals
* All HC professionals should be aware of the difficulties of transition
* Try to support the young people
* Adult HC could take a little more time with YP on their first appointment to ease them into adult care.
* Make sure there are not long gaps between paed and adult app.
GP
* more paed training
* long term condition understanding,
* Make sure a long term care plan is in place for YP with chronic conditions
YP
* start trying to take responsibility from around the age of 16
* talk to Health care professionals about transition early on
RCPCH
* Make transition a priority
* Continue empowering YP
The Big Discussion Team with BBC Radio 1 Surgery’s Aled Jones #TBD