Transitioning through the NHS
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
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?