CARE should travel with the patient — so why does it stop with psychiatric admissions?

Why are care assessment plans, which are approved by the local authority, treated as not relevant when a patient is admitted to a psychiatric hospital?

As someone who has spinal cord injuries, an amputated right leg, osteoporosis and kyphosis as well as bipolar and reactive depression, I have carers who are with me each day to look after my personal and practical health needs. This care is approved and funded by the local authority.

If I’m admitted to a general hospital, the care I receive in the community is passed on to the nurses who will deliver it along with the treatment being given. When I am discharged any changes are passed on to my care agency along with my GP. 

The problem comes if I’m admitted to a psychiatric hospital because no matter what my care assessment contains, the care I need stops. 

Care is meant to travel with the patient but instead it hits a brick wall — I would be left with nurses or, more than likely, untrained nursing assistants, who often don’t fully understand my needs.

Over the last 30 years I have seen very little improvement in how mental health services care for someone with disabilities.

During my most recent stay in a psychiatric ward, my medication wasn’t given to me for 48 hours even though my blister pack was in the drugs trolley. 

During visiting time my mum had to sneak into my bedroom to carry out my most urgent personal care needs, knowing this was against the wishes of most of the staff on duty.

If I was admitted to a psychiatric hospital today, my mum, who is now elderly, wouldn’t be able to provide the same level of daily care, nor have the physical strength to handle me or bring in items such as alternative wheelchairs or a pressure-reliving mattress. 

I had hoped things had got better, after all, my experiences were five years old, but in May 2021, Tracy* who is autistic and has Ehlers-Danlos syndrome (EDS), along with other serious disabilities and medical conditions, was admitted to a psychiatric ward and reported multiple concerns as to how she was treated on the ward.

In the community, Tracy has daily carer visits for help with her personal and practical care needs, but this stopped as soon as she was admitted to the psychiatric ward. This even extended to vital mobility aids. 

Due to her EDS, Tracy finds it hard to push herself using a manual chair, so instead has an electric wheelchair, but when she was admitted to the ward Tracy was told she couldn’t use this chair due to it needing to be charged. Tracy asked if they could charge it in the office instead but, again, this was a “no.” This meant she had to struggle with a manual chair. 

With no assistance for her personal care, Tracy suffered abuse from staff because she couldn’t use the shower. 

Tracy also made it clear that she required a coeliac diet. For a brief period, she got vegan meals as a substitute, but then this stopped. 

The only option available were the meals everybody else on the ward was having, which in effect meant Tracy had to go hungry. The staff treated her avoidance of these meals as “behaviour problems.”

“Mental health wards are simply not designed to accommodate physical disabilities,” Tracy says. “It was so frustrating, because on top of that the government cuts your disability benefits after a month — the reason being you are supposedly receiving care from the hospital.”

As Tracy says, psychiatric wards are not suitable for those with disabilities. This doesn’t just relate to care but to bricks and mortar. Even psychiatric units built recently aren’t fully accessible.  

For example, when I was last on a psychiatric ward, it was in a new building, but I couldn’t even get out into the garden area without assistance from fellow patients. Also, I couldn’t use the bathroom unless the door was cranked open due to a lack of space. This might seem a minor problem, but with male as well as female staff entering my room, it made me feel unsafe.

The many concerns disabled patients have leads us to question the extent of the training a nurse has on dealing with disabilities? Bar dual-trained nurses (who are both general and psychiatric trained staff) mental health nurses only get a cursory overview of those with a dual diagnosis. When the “other” diagnosis is physical disabilities, this is often overlooked completely in training materials.

Of course, the pandemic has meant there is currently massive pressure on all front-line services, but a hectic, busy ward should give all the more reason for nurses to seek out those with disabilities to ensure they are safe and getting the assistance they need.

Due to the lack of dual-trained nurses, one possible solution is to have a named nurse who is responsible simply for the practical and personal needs a patient has from the time they are admitted to when they are discharged. Such nurses should in return for additional training receive an increase in pay, subject to the number of patients under their care. 

The lack of trained staff was something Carol found when she was admitted to a psychiatric hospital recently. She has bipolar and rheumatoid arthritis along with other significant medical conditions and was very concerned when the staff clearly had a lack of training around comorbid mental and physical needs.

“It took some time before they realised I was at extra risk of infection,” Carol says, “or that I have considerable personal care needs, such as washing my hair, but there were hardly ever enough staff available to do this.

“It was all very stressful because various aspects of my physical disease were just not understood, and this led to a lack of communication about my physical care when they were handing over my care to nursing staff.”

It is bad enough that people with disabilities are overlooked in society, but the fact that NHS mental health care fails to address the needs of those with disabilities is resulting in serious harms and has the potential to lead to fatalities.

Unless the situation is resolved, more patients will avoid reaching out for help, scared of what might happen if they must pass complicated and critical care needs, like that of Tracy and Carol, into the hands of inadequately trained mental health staff.

*Names have been changed. Ruth F Hunt is a freelance journalist and author.