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The missing disabled mental health service-users

Patients who have both physical and mental health requirements are suffering under the current system — they must be listened to and their input taken on board in the upcoming reforms, writes RUTH HUNT

THE long-awaited White Paper reforms to the Mental Health Act (1983) contain some important proposals that begin to address the long-standing issues such as discrimination in who gets sectioned and the role of relatives — but there are still some groups of patients who face particular challenges when sectioned who don’t feature in these measures at all.

One such group are those who have both a mental illness and physical disability or health condition who find themselves sectioned but who face the same problems time and time again. This can have devastating consequences for their health and make service users justifiably nervous when handing over their care needs to psychiatric staff so they can concentrate on getting well.

Of course, there can also be problems for patients on a physical health ward with their mental health needs not being met, but many service users say the main difficulties surface when on the psychiatric side, where they can suffer neglect due to the attitude and ability of staff and inaccessible wards.

The risk of such poor treatment is exacerbated if the patient is placed out-of-area, where family and friends may not be able to visit as much and the important monitoring role that specialists have in the patients’ overall care is lost.

One of the first hurdles a patient with disabilities has to face is one of the most baffling: nursing staff refusing to believe they are telling the truth about their condition and the extent of their needs as a result of it.

Daisy has complex physical health needs, with severe asthma, type 1 diabetes, Cushing Disease and is under investigation for Mitochondrial Disease. This means she sees specialists from the endocrine, neurology, respiratory and mitochondrial services. For her asthma she has a gruelling three-hour long regime of antibiotics, nebulisers and physiotherapy along with inpatient stays for infusions. She also has a severe mental illness: a psychotic disorder.

“When I’m admitted to general hospital,” Daisy said, “I’m listened to much more and I find the staff are more willing to accept my experiences. They also respond when I’m becoming critically unwell.

“This is completely the opposite of my experiences in psychiatric services. I have to battle for psychiatric professionals to take my conditions seriously. They won’t listen to me and won’t accept what I do each day to keep well. They won’t contact my specialists. I’m the same person in both places, yet the response is very different.”

Daisy is very aware when she needs emergency treatment, but mental-health staff have refused to believe her, insisting she is fine: “One day I asked for the doctor to be called, but that was refused. As my condition means I can deteriorate very quickly, I then had to call an own ambulance from the ward.

“Another time, the staff cancelled the ambulance as they felt I didn’t need it. This delayed treatment meant I became seriously unwell. A couple of days later, the hospital had to call an ambulance as an emergency and I was admitted to the high-dependency unit.”

Hannah, who has paraplegia said: “I needed a doctor because I was having problems catheterising. Even though my stomach was starting to swell, they didn’t call him. I phoned my dad and asked him to call the office and the nurse told him that I was only wanting the registrar so I could have a sexual experience! We couldn’t believe it.

“My dad told them again that I don’t have sensation below the waist, but it was only when he said he was going to make a complaint that finally the doctor was called. After that incident I became very scared about what would happen if I was seriously ill with an infection or something like that, because I don’t think they would notice or do anything at all.”

The lack of knowledge about health conditions and disabilities, plus the scarcity of dual-trained nursing staff who have both general nursing and psychiatric nursing qualifications can mean the response to these service users puts them at considerable risk.

It is not just the nursing staff who fail in this regard but doctors too. They have been criticised for their attitude and particularly how they prescribe (or fail to prescribe) key medications.

Daisy said: “Doctors often refuse to prescribe antibiotics in the way I am normally managed. They don’t listen to me and refuse to seek clarification from my specialist. I have also had issues where the out-of-hours junior doctor might not have experienced someone with my health issues before, so they tend to presume it’s related to anxiety or a psychiatric issue.

“This had led to me getting worse and needing hospital admission. It’s happened so many times, I find going into psychiatric hospital extremely dangerous for my physical health.”

Added to these staffing problems are the limitations on resources and accessibility. This is a major difficulty as disabled patients are still being placed on wards that are not fully accessible, where the managers do not make the necessary adjustments to accommodate that patient and any future patients with similar requirements.

“They didn’t even have enough pillows,” Hannah said. “So, when I asked for a pressure-relieving mattress and cushion, I knew it was going to be a ‘no.’ In the end, my parents brought in what I needed.

“My mum got permission from the psychiatrist to come in and help me get washed because there was no hoist and the staff refused point-blank to do any personal care. If I had been miles away, or didn’t have my mum to help, I don’t know what would happen.

“Even though I had this help from home, I missed things like occupational therapy because there wasn’t a lift in the unit. I couldn’t get out into the garden because there were steps down to it.

“The staff stopped other patients lifting me and then said they couldn’t do it either. It was summer and really hot, but I had to spend it inside. Most of the time I don’t feel disabled, but I really did then. The staff haven’t got a clue.”

Rethink, one of the largest charitable providers of services for those affected by mental illness, is asking service users to respond to the White Paper. For those in a similar position to Hannah and Daisy, this is important.

Rethink chief executive Mark Winstanley said: “Despite its faults, the Mental Health Act is a lifesaving piece of legislation. It protects people when they are very unwell. But now nearly 40 years old, it is desperately out of date and doesn’t reflect how a modern society thinks about mental illness.

“The White Paper is a big step towards change. In the coming days and weeks we will be encouraging people that have been affected by the Act or who may be in future to respond to the consultation, and will be engaging with our supporters and beneficiaries in the hope of seeing major reform to the Mental Health Act in the near future.”

Key reforms that are so far missing should include legal rights for service users who have both physical disabilities and a mental illness, to ensure their needs are met and they are treated on accessible wards. Such rights must mean there are consequences for any trust that doesn’t make the necessary adjustments to give such patients what they need.

It would also be good to have a suitably trained individual to oversee these rights and act as a care co-ordinator solely concerned with organising the physical care needs of that patient.

Finally, much more training needs implementing so that all staff can appreciate what it means to be disabled and how physical health can impact mental health and vice versa.

Only then might service users like Daisy and Hannah feel confident in handing over their care needs to staff, so they can concentrate on getting better.

Rethink can be found at https://www.rethink.org.

Ruth F Hunt is a freelance journalist and author of The Single Feather (Pilrig Press).

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