When I sustained my incomplete spinal cord injuries (SCI) aged 18 and was told my diagnosis, I thought that was it. But later, I was given some hope, with the spinal team telling me there might be some improvements in the next year.

A year* plus my time in hospital, I had an outpatient’s appointment at the Spinal Cord Injury Centre (SCIC) where they re-tested my neurological function. After that, my consultant told me it would be ‘highly unlikely’ there would be any changes to my condition.

Prior to this appointment, I was hoping the consultant would tell me that the feeling below my waist would improve. I had incomplete paraplegia and could feel a slither down the front of my legs but not the sides or back of my legs and not my bottom or below my waist.

More than anything I was hoping he would tell me there would be some improvement with my bladder and bowel. After leaving hospital, I had ‘accident’ after ‘accident’. I would get upset each time and was barely leaving the house in case of more embarrassing ‘accidents’.

Hearing that it would be ‘highly unlikely’ for any improvement, removed hope completely. It was a huge blow psychologically.

The lack of mental health support at the time of this appointment was something that has stuck with me many years later. I was told the news on my own, with my mum left in the waiting-room. This meant I had to repeat what had been said and saw etched on her face, the devastation I felt inside.

The consultant knew I had mental health problems, with my SCI the result of an attempted suicide, but there was no effort made to have extra support in the room, be that a nurse, my mum or even a box of tissues.

What’s more is following this consequential appointment with my spinal surgeon, I found out, purely by chance, my GP along with my mental health care-coordinator, hadn’t been informed about this appointment or what had been said in it. This meant for months and months there could’ve been more support given to my mum and I during this difficult time.

So, I know that hearing this news, can have a devastating impact and was sure it was still going on. I asked if anyone had more recent examples. One testimony that stood out was that from Colin*.

Colin had back surgery at his local district general hospital, but following problems after this surgery he was seen at the SCIC. Three months later, he had a full ‘neurological MOT’ where they tested his power, movement and sensation. Following this he was diagnosed with Incomplete Cauda Equina syndrome (CES).

Colin said: “I had follow-up by the nursing team to instigate my bowel regime alongside a plan to commence intermittent self-catheterisation as I could only pass urine by straining severely and my bladder wasn’t emptying fully either, which would have led to me having further issues. They told me I had neuro-genic bladder and bowel problems alongside sexual dysfunction.”

With this news, Colin was given a tiny degree of hope: “The medical team indicated that my symptoms may improve over time, and that I have a window of 24 months since the onset of CES whereby I may see improvement – therefore my current symptoms were not, at the time, diagnosed as life-long.

“The onus on improvement played on my mind heavily throughout the 21 months I had left after I had seen the SCIC team,” Colin said, “and I really struggled mentally in the build-up to the appointment.”

The appointment arrived and he was tested neurologically again. Although there was some improvement with slight sensation on one side of his buttocks and groin area, it was unfortunately not as significant as hoped for by Colin.

In the brief meeting with his consultant, Colin was told his neurogenic bladder, bowel and sexual dysfunction would be permanent. That the window of opportunity had passed him by and the symptoms he had, would remain with him forever.

Colin said: “I was understandably really upset and the emotions I had when I was first diagnosed with CES came flooding back.

“I was supported emotionally by the team in the appointment. But there was no discussion around my mental health needs, the impact of the news or any discussion on how to come to terms with and adjust to the news of now having a permanent disability.

“I was really shocked at this and had to lean on therapeutic skills I learnt in the past. I remained on the same antidepressant medication which helped. Also, the support from my wife, family and friends were more important and meant way more to me in this aftermath period.”

But Colin is aware, if he didn’t have this support from his family and friends, he would’ve really struggled. That’s because following the appointment, he received no support from his spinal team.

“They gave me the prognosis, then they just dropped me, or that’s what it felt like,” Colin said. “The only correspondence I had from the SCIC was my next appointment, in a years’ time, for a bladder and kidney scan and to speak with the spinal consultant again.”

Colin said: “If it wasn’t for my own awareness and coping strategies regarding my own wellbeing, then I believe I could have gone back to a dark place. The lack of follow up from the team, and essentially ‘no further follow up until your yearly appointment’ seems like it was a drop in the ocean in terms of support.”

If we look at these appointments, there are three key points. First is the time-limit aspect. As we have seen from the testimony of Colin, having this time bear down on you can be mentally draining.

Second, we are given our initial diagnosis in hospital with 24-hour support available. Unlike this, the ‘prognosis appointment’ takes place in an outpatient setting, without the same level of emotional support.

Third, hearing there’s ‘unlikely to be any more improvement’ might mean someone feels like it isn’t worth carrying on with physiotherapy. This is important because some people with incomplete injuries have felt some improvements years after the initial injury with the help of time in the gym and pool, for example.

But being told it’s highly unlikely anything will change, can also mean some people feel like there’s not much worth living for, if that’s the case.

Due to this, mental health monitoring as well as primary care support should be very active. But this isn’t happening.

Professor Linda Gask, a retired consultant psychiatrist said: “There really must be better joined-up mental health support for people receiving this life changing prognosis both in the appointment and after. GPs also should be informed where their patient can seek specialist psychological support, and they can get advice.”

To receive a diagnosis of SCI or CES is traumatic enough, without a prolonged ‘prognosis appointment’ that happens away from the support of a hospital environment and without adequate mental health support and primary care involvement.

As Colin said: “The mental health needs should be incorporated into the appointment, with support during, and then a check in appointment afterwards should be made.

Otherwise, I feel like myself, and many others like me, will be failed by the system, without proper consideration for the impact such a poor prognosis will have on our wellbeing.”

*The time given can vary – 18 months or 2 years.
*Name changed for confidentially