Transitioning through the NHS

Imogen_Steele

Imogen was born with quadriplegic spastic cerebral palsy, dystonic type. She is an avid blogger, has recently graduated from university and is passionate about disability rights. Here, she talks about her experience with how her treatment and care changed as she transitioned through the NHS.

Being born with complex cerebral palsy, I spent a lot of my childhood in and out of hospital, visiting a range of specialised consultants, neurologists and physiotherapists. I was under the care of three separate hospitals, including Great Ormond Street. As I entered the transition phase between paediatric and adult services, GOSH recommended my referral to a specialised adult service in London, however this advice was ignored.

I was placed under the care of one consultant at my local hospital. For the next three years, I received no active treatment, instead having to rely on high doses of baclofen that left me exhausted. I was desperate and as my health declined to an all-time low, I was forced to split my last year at university. Only when my physical condition had deteriorated completely, did my consultant refer to me a pain specialist at the age of 22. I’m now under the care of four consultants, two of whom are neurologists. I have spoken to many medical professionals who sadly agree that my experience is typical of most patients transitioning from paediatric to adult care.

Transition is a struggle. Not all NHS adult services possess the same provision of support for those with long-term health conditions, as paediatric services do. This was especially apparent when I tried to access adult physiotherapy. In adult services, you’re referred for a six-week course of physiotherapy to deal with a particular issue, but when your entire body is a complex medical puzzle, this system simply doesn’t work, especially when you will often see a different physiotherapist each session.

Moreover, the services available to you as an adult depend entirely on your local NHS Trust. The only way I could receive physiotherapy from the community team was by moving into my local university halls to meet the postcode requirement. Unfortunately, my local NHS Trust does not offer the neuro physiotherapy I require in adult services. I was referred to a reablement service who after several sessions agreed I was beyond their expertise. I now have to seek costly specialist treatment outside of the NHS all because of where I live.

My transition from paediatric care to adult services left me feeling abandoned by the NHS. This period of uncertainty not only negatively affected my physical health but also impacted my mental health, which previously had never been an issue. I am now leading a happier life both physically and mentally now that I am under the care of specialised consultants who are providing me with treatment options to manage my condition. I feel it is a great shame that it took 4 years to reach this point. I will however say that all of the medical professionals that I saw during my transition were doing their best in such a pressured environment.

Transitioning from paediatric to adult services is like entering another world. Age should not determine the level of care an individual receives in the NHS, but unfortunately it seems to.

If you’re about to transition, or know someone who is, here are some useful tips for the process:

• Clearly communicate your medical needs to your new medical practitioners
• Be determined to fight for the medical support you require
  Build good relationships with the medical professionals you have access to
• Understand that medical practitioners are generally trying their best and may not have the expertise that you have become accustomed to under paediatric services.
• Use your GP. General practitioners are able to refer you to vital medical services.

Let me know your experience of transition in the NHS. If you are currently lost in transition and need advice or support please leave a comment. What are your thoughts on the adult services in your area, as it is truly a postcode lottery?

Ails

Hi @Imogen_Steele,
Thank you for sharing your experience of transition in the NHS with us.  I'm sorry to hear that you had such a bad experience transitioning from paediatric to adult care, as this must have been really stressful for you.  Glad to hear you are receiving better care now.  Thanks also for the useful tips,

I had fantastic care in the NHS when I was a child, but sadly this was not so when I moved into adult care.  Struggling with chronic pain from a dislocated hip which was getting worse, I was passed from pillar to post, seeing several Consultants, who kept discharging me after one visit until I received an hip replacement in 2015.  I agree that it is not the fault of the medical practitioners as they are doing the best that they can under a struggling NHS and with what expertise  they have.  It often takes a couple of referrals before you find the medical practitioner who can help you.  Sadly this does not help the patient any.  Where I live now is rural where adult services are fairly sparse and the nearest hospital is 50 minutes away, but the care there is good.  I am lucky enough not to have to attend hospital now too much so is less stressful for me, but it must be a nightmare for people who do require a lot of care and haven't had the best experience in transitioning in the NHS.

Imogen_Steele

@Ails thanks for sharing your own experience. It sounds very similar to my own. It’s nice to know I’m not alone! I am glad you don’t have go to hospital too much anymore. 

Ails

Thanks @Imogen_Steele.  Yes, our experiences do sound similar and you are defintely not alone.  I enjoyed reading your guest blog. 

Imogen_Steele

Thanks ?

Ails

You are welcome. x 

zakblood

sorry to hear about your 4 year journey etc, your really aren't alone, and while no one want's to be in the same boat as anyone, it's really crowded atm and close to sinking, been with the NHS for 20 odd years myself with one thing or another, and tbh i'm very happy with the care and service i've received along the way, but out side of that, the DWP and care system as a whole for me is in melt down and has got for me to a point that it's no longer fit for purpose, with a caring system now becoming a money grabbing careless system just penny pinching from those who are in greatest need, now even a basic nurse can over turn what a consultant says and no matter what medical advice one gives at a given level, another lower one can over ride and stop almost anything now days, fighting the NMC atm, so thanks for the blog and good look for the future

Richard_Scope

Fantastic and important piece @Imogen_Steele. Especially as there are no specialists in the U.K. for CP. It's crucial that people know how best to make the multi-disciplinary approach work.

April2018mom

This is my experience with the NHS. My son has a whole lot of different doctors. We currently see a NS, a orthopedic, a orthotist, a physical medicine, a wheelchair guy, a therapist and a social worker. I’m considering private medical care for my little boy. I believe in our health care providers but they don’t always provide a decent standard of care for patients. 

Imogen_Steele

Thanks @zakblood for sharing your experience. I’m glad to hear that you have been satisfied with the care you received from NHS. I agree that the NHS on the whole provides an invaluable and great service. I’m sorry to hear about your struggles with DWP and the care system but I fear this kind of poor service is going to be more common place as a result of the large amounts of cuts currently in action. I wish you luck with your fight with the NMC

Imogen_Steele

Thank you @Richard_Scope It can indeed be extremely difficult to get to see the right specialist. I’m glad you found this an interesting read 

Imogen_Steele

@April2018mom I’m sorry to hear that you and your little boy have had a difficult time with the NHS. It can be very overwhelming having many different professionals involved, often focusing only on their own specialism. That said, there are a lot of great people in the NHS, I certainly had a lot more support available to me as a child than I have had during transition to adult services. I am lucky enough to have a team around me again now. It can be frustrating trying to coordinate the different professional and keep them all in the loop, but it can be done with determination and perseverance. I hope things get better for you in the NHS

April2018mom

Imogen_Steele said:

@April2018mom I’m sorry to hear that you and your little boy have had a difficult time with the NHS. It can be very overwhelming having many different professionals involved, often focusing only on their own specialism. That said, there are a lot of great people in the NHS, I certainly had a lot more support available to me as a child than I have had during transition to adult services. I am lucky enough to have a team around me again now. It can be frustrating trying to coordinate the different professional and keep them all in the loop, but it can be done with determination and perseverance. I hope things get better for you in the NHS

I agree. We’ve had great experiences with some of our doctors. I think that if I keep giving feedback it will improve things.