‘I’ve been stuck in my bedroom for two years’

People living with rare conditions often cannot live their lives to the full because they experience disjointed care, a charity is warning.

Daisy Simpson knows this only too well. She has 17 different health conditions including Moyamoya disease, which affects just one in a million people.

The 34-year-old from Brentwood, Essex, dreamed of becoming an actress when she was growing up, but her reality could not be more different.

Daisy has been confined to her bedroom for more than two years due to issues finding suitable housing.

She was diagnosed with the disease, which fuses the brain’s blood vessels, at Addenbrooke’s Hospital in Cambridge after suffering a stroke and a brain bleed in January 2021.

“Before all of this went drastically wrong I was doing acting and theatre work. I never in my wildest fears thought it would be this bad,” she says.

Doctors say brain surgery could potentially extend her life but she would only have a 50/50 chance of surviving the operation. Without it, she believes she has less than five years to live.

Instead of being able to enjoy that time, Daisy is stuck in her bedroom because her wheelchair does not fit through the doorways in her flat.

She cannot access the bathroom unless carers wheel her through using an office chair, leaving her “in despair”.

“I feel dehumanised, I feel degraded, having to have intimate care in a setting where there is no privacy. I’ve been made to feel like I don’t matter and I feel angry I’ve been left like this,” she says.

“I can’t have any independence. By the time I move it could be another year and that scope for independence will have gone. It is soul destroying.”

Daisy has been waiting for an adapted house for two years.

Brentwood Council says it has identified a property but it requires extensive work to meet her needs.

“The housing situation is stealing my life. We know I’ve not got long left and to be stuck in this room every day is horrific,” she says.

The council says it is working with multiple agencies to provide the best support it can and officers are looking for a suitable temporary home for Daisy while the work is being carried out.

“Nationally there is a lack of social housing, in particular housing for people with disabilities,” a spokesperson said, adding the council is trying to improve provisions across the borough by building new council housing.

Alongside her battle to get more suitable accommodation, Daisy says she has to act as a project manager for her health.

As well as Moyamoya disease, which puts her at huge risk of further strokes, she has a respiratory disorder which can cause her to stop breathing, a bowel disorder and type 1 diabetes.

Daisy is under the care of more than 50 different medical professionals from seven different hospitals and community teams across England, with no central point of contact for her care.

“Things get missed and it is chaotic. People with rare diseases need a rare disease co-ordinator but I don’t have one,” she says.

Louise Fish, chief executive of the charity Genetic Alliance UK, says this is a common problem for people with rare diseases and good care co-ordination can be “transformative” when it happens.

“Rare conditions are often life-long and complex and people living with rare conditions and their families need joined-up care from a range of services and healthcare professionals to help them live their lives to the full.

“Sadly only four out of 10 children and one out of 10 adults living with rare conditions have a care plan setting out how their care will be coordinated,” she says.

Daisy struggles to retain carers as they have to sleep on a pull-out bed in the living room.

There are also particular issues finding carers qualified enough to deal with her complex needs.

She relies on friends who are now being paid to care for her, including family friend Brian Kerr.

“I’ve seen Daisy go from a really active teenager to the state where she is now, where she has a complete lack of ability to do things for herself,” he says.

“It’s distressing. I try and do everything I can to help but without the professional services acting as they should, there is very little you can do.”

The Mid and South Essex Integrated Care Board is responsible for Daisy’s care. It says Daisy is in receipt of a personal health budget which is funding carers to provide her with “a significant level of support”.

“The local NHS continues to support Daisy to make sure she has a package of care that meets her needs. The recruitment and employment of a care co-ordinator can be supported by the local NHS, but the final decision would lie with the patient,” a spokesperson added.

It added it was hopeful a date for system-wide multi-disciplinary meetings could be agreed soon.

Daisy believes the stress of her current situation is unmanageable and she hopes she can spend some of the time she has left in a house that gives her more independence and privacy.

“Even if there are budget cuts and things are stretched, humanity costs nothing. I don’t feel cared for. I don’t feel safeguarded. I don’t feel like a person any more,” she adds.