Living with ME: why awareness is crucial for supporting people

Published by Professional Social Work magazine, 22 May 2023

As new guidelines for social workers are recommended under the National ME/CFS Delivery Plan, LOUISE PALFREYMAN talks to a young woman with the condition who believes better information is crucial if professionals are to support people effectively…

Naomi Gilchrist was at university when she was struck down with a bout of flu that developed into bronchial pneumonia.

She was left so debilitated she had to drop out of her course. Ten years later she is living at home with her parents and is largely housebound.

Her ME is so severe she has a care package in place – Naomi needs help with getting up, washing, and dressing, social activities, going out in her wheelchair, meal preparation, managing medication, and bedtime.

She is monitored for bed sores and can suffer seizures and blackouts. She is light and noise sensitive, has cognitive issues, mobility problems, is often in pain, and is prone to falls.

“It took nearly five years for me to be diagnosed with ME – my GP kept saying I had Post-Viral Fatigue Syndrome,” Naomi says.

After her diagnosis, she spent time in a specialist rehab unit but graded exercise therapy made her worse.

Surgery in April last year has also caused a serious relapse. She is now restricted to one activity a day, and has to plan everything she does, balancing exertion with rest.

Naomi has faced many occasions where health and care professionals struggle to understand what is wrong with her.

“It took years for a care package to be put in place,” she explains, “leaving me missing meals, without personal care, going days without bathing because I couldn’t manage it, and often forgetting medication.

“Now I am planning to move into my own place and live independently, I’m worried my care package will be affected again, and that my hours may be cut.”

One in four people in the UK with ME are so severely affected that they are house or bed bound. Less than ten per cent of people with the condition are in full-time work, and 80 per cent do not work at all, according to the charity Action for ME.

The cost of living crisis has added to the pressure on people with the condition. People severely affected are experiencing high energy costs to run equipment such as mattresses, wheelchairs, hoists, and feeding pumps.

A recent ONS survey found that 55 per cent of disabled adults were finding it difficult to afford their energy bills. Rising food prices are also making it very challenging for those on a restricted diet to eat healthily and manage food intolerances, which can be among symptoms.

Despite the presence of a national delivery plan, recent investment in Long Covid research failed to include other energy-limiting diseases - a ‘lost opportunity’ according to campaigners.

A full appreciation of just how disabling this much-maligned condition can be is essential, Naomi argues, if social workers are to effectively advocate for clients with ME.

One of the key misunderstandings, she says, is not appreciating the time it takes for someone with the condition to perform even basic daily tasks. Everything takes twice as long, and so any cut in her care package when she moves house could be disastrous, as Naomi explains.

“If my care package hours were cut,” she says, “it could leave me with only half an hour of support to sort out my meds, get washed and dressed and deal with my medical devices. It’s just not possible.

“I need one and a half hours at least, because everything takes longer.”

Naomi employs personal assistants via direct payments because she found agency workers lacked the necessary knowledge about her condition.

“Using an agency lasted a week. They were constantly late, and I became so physically and mentally ill I had to stop. The carers were rough with me, so I got a PA, who I’ve had for more than two years.”

Cuts to social care services have made it harder for people with ME, Naomi believes: “I used to have a social worker who knew me and my needs, knew that I needed extra time, my medical conditions, everything.

“Now it’s all changed because of cost-cutting, so I get a different social worker each time, and a new worker won’t necessarily understand how my condition impacts on how my care has to be given.”

A spokesperson for Action for ME said: “ME is a complex neurological disease. It is poorly understood from a research and health perspective which makes it difficult to know how best to support people.

“Additionally, there is a lot of conflicting information on the internet which can be confusing for time-challenged professionals.  We feel there should be resources available for social workers which provide them with tips to aid their work with people with the condition.”

Naomi says better information for social workers will ease some of the transitions experienced by service users and broaden understanding.

She has the following advice: “ME isn’t just about being tired. It affects everyone differently so listen to the person and how their ME affects them.

“Understand that a big part of managing the condition is pacing, and that means activities and basic tasks need to be drawn out. What can take one person ten minutes can take a person with ME half an hour.”

NAOMI’S TOP FIVE ASKS

• Break assessments up into more manageable time frames
• Have the same social worker for assessments to build a relationship
• Have a basic knowledge of the equipment and specialist services people with ME may need
• Visits may need to be in a dimmed room and conversations carried out quietly
• Take notes for the client if they struggle with their memory

RESOURCES

Action for ME has produced guidance for professionals, including working with children with ME and a page of information for social workers

The charity provides a range of services for children, adults, families and professionals – more info can be found here