Transitioning through the NHS
Imogen_Steele
Member Posts: 42 Courageous
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.
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?
Replies
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.
Scope community team
Specialist Information Officer - Cerebral Palsy
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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
@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