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Time to talk about care for those with spinal cord injury

A new screening method to ‘catch’ patients with emerging and existing mental health problems is proposed, but will the resources and treatment on offer result in the change that is so desperately needed, asks RUTH HUNT

ON Time to Talk Day, the day we come together to talk, listen and change the lives of those with mental health conditions, we need to hear about those who are not receiving the mental health support they should receive.

One such group is those with spinal cord injuries (SCI) who have been saddled with one-sided care, with the Spinal Injuries Association saying: “The psychological damage caused by a spinal cord injury is, at best, considered as an afterthought, and at worst, completely ignored by the medical profession.”

Levelling up between the physical needs of a spinal cord patient and their mental health issues is first going to need an accurate picture of what the need is in this area.

The current statistics of 1 in 4 patients experiencing psychological problems is thought to be an under-estimate and is due to the dominant method of referring patients by the lead clinician to the Liaison Psychiatry services.

Although referring does get some patients the mental healthcare they need, there tends to be a biased view in who needs that care, with only the most complex cases thought to need psychological support but those with incomplete injuries thought to be in the least need.

There is no research that backs up the assumption and this has led to the lopsided, patchy provision of mental health services for this group.

What’s now proposed is to add the screening and monitoring of patients. Screening means both a standardised and therefore fairer approach to identify individual needs.

It also will help in terms of recognising how prevalent psychological and mental health conditions are following a spinal cord injury.

As screening can be done by all members of the multi-disciplinary team, hopefully more people can be identified without adding to the workload of Liaison Psychiatry.

So how would these proposals work?

Dr Jane Duff, Consultant Clinical Psychologist and National Spinal Injuries Centre (NSIC) Head of Clinical Psychology at Stoke Mandeville Hospital said: “For those patients with pre-existing mental health difficulties, the treating team in the major trauma centre (MTC) or district general hospital (DGH) will need to understand their ongoing mental health and associated treatment needs, with additional pre-admission planning prior to specialist SCI rehabilitation, as outlined in the Psychological and Mental Health Standards.

“For all patients it is recommended that a brief screen for symptoms of anxiety and depression and suicidality be completed within four weeks of injury.

“For patients being transferred to specialist SCI rehabilitation, further screening and formal  assessment/treatment and screening prior to discharge to identify community needs is recommended, as outlined in the SCIST-FINAL-2022.pdf (mascip.co.uk).”

This would’ve helped Andrea from Wilshire who said: “I really wish a proper psychological evaluation could have been done in hospital to help not only identify what issues I might have, such as PTSD from the accident that can get triggered by everyday situations, but also recommend possible solutions. As it is, it took a riding instructor to talk about her own experience with Eye Movement Desensitisation and Reprocessing (EMDR) therapy for me to even hear of it and realise that sounded like it could be very helpful. “

Andrea also felt that the nursing staff were of little help during her rehabilitation: “There was a huge gap missing in the rehabilitation stage of recovery talking about the link between your physical and mental needs. I remember thinking there was little empathy from a lot of the nurses who, for them, were there to do a job, but for us, having things done to our bodies, or to ourselves, it was all new and horrible and honestly traumatising.” 

This knowledge gap and a lack of confidence in assessing and addressing the psychological needs of patients is something Duff and her colleagues have identified as key. 

NHS England transformation have supported a time limited psychology education project, which has been oversubscribed, as part of the NSIC Clinical Education Transformation Team. But the funding for this project ends in March 2023.

A bid to make this provision substantive has been submitted to NHS England, but funding has yet to be allocated. What it would provide is a training curriculum for all staff working with people with spinal cord injuries.

To also support education and training, the Spinal Injuries Association have secured funding from the NHS for a Mental Health Support and Education Pilot Project for the South-east, the project will supply training and support to healthcare professionals in the area to build greater understanding, awareness and skills amongst district general hospitals, major trauma units and SCI Centres.

Often patients can’t disclose how they are feeling on-cue in a ward-round or outpatients meeting. Instead, it’s far more likely they will identify a nurse or other support staff member who they trust to speak to, which could be in the middle of the night or as they are being helped with a task. Such staff members, as Andrea said, need to be able to respond in an empathetic manner. 

The problems are not just limited to staffing but also the current treatment on offer to those with psychological/mental health needs who following their discharge are usually referred to their local services. The route is often through NHS England » Adult Improving Access to Psychological Therapies programme

This is a stepped care, protocol, and time limited approach. Psychoeducation in cognitive behavioural strategies is the first step, with individual therapy from a psychological wellbeing practitioner at level 2 and individual therapy with a clinical psychologist at level 3.

The protocol nature of the intervention means that it often fails to adequately meet the concerns following spinal cord injury, with the drivers of someone’s mental health difficulties being their adjustment and transition into the community, identity, confidence, and sense of purpose.

Duff said: “If these are not adequately addressed, they can lead to depression or anxiety and/or a worsening of mood problems and reduced quality of life. There is also a significant potential for self-neglect after SCI because of mood difficulties with issues like pressure ulcers and rehospitalisation.

 “There is a wealth of research evidence showing that psychological adjustment continues for some years after discharge from inpatient rehabilitation and the time limited and protocol approach of Improving Access to Psychological therapies (IAPT)  is not flexible enough to respond to this need.

“All patients admitted and discharged from the NSIC between 2017-2018 were interviewed and 40 per cent of these said they would have needed, and did not receive, psychological support after discharge.

“This estimate does not include people with complex mental health needs.  International research has also found that about 10 per cent of patients who did not experience depression and anxiety during their initial rehabilitation developed depression and anxiety later.  Almost all SCICs are unable, due to resourcing, to provide outpatient psychological treatment after discharge.”  

This gap in provision has left people floundering. Trying to access the right mental health support in the community can be difficult enough with the demand high but add on to that a real lack of services for SCI and mental health. It’s no wonder people are left wondering where they can go to get help.

This is where the Spinal Injuries Association have recognised the lack of suitable provision and have worked hard to plug this gap with their advocacy and new counselling and wellbeing service.

Tina from south-west England said she had been searching for the right mental healthcare that considered her SCI: “I tried everything suggested by Google and that included private therapy, but nothing seemed to work.

“It wasn’t until I was put in touch with Stephen from the Spinal Injuries Association that there was a breakthrough.

“Stephen came up with a simple plan, making small changes and addressing different aspects of my life after each session.”

This had such an impact on Tina that even when she needed an operation, she still managed to achieve her daily exercise plan along with journaling, creative writing, and meditation.

The recommendations now are to screen for mood, substance use and pain during outpatient reviews, referring patients on for treatment if that is required. The aim of this is to catch those who have ongoing mental health problems, patients who should be seen by local services or identify those whose needs have changed over time.

Also, if patients are admitted to SCIC for secondary care related to their SCI, screening for mood and substance use would be completed on admission. 

Picking up more people with existing or emerging mental health needs is only possible if there are the resources to do the screening, and for those then referred for treatment, viable options available for them.  This is crucial because currently mental health provision for those with SCI is dire as outlined here: https://www.theguardian.com/society/2020/sep/16/nhs-fails-people-depression-and-spinal-injuries

That’s why on Time to Talk Day 2023 organisations such as The Spinal Injuries Association and Back-Up continue to have such an important role, supporting people with spinal cord injury from the start of their journey, and then throughout their life.

 

 

 

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