'I've been stuck in my bedroom for two years'

People surviving with uncommon conditions often cannot unrecorded their lives to the afloat due to the fact that they acquisition disjointed care, a foundation is warning.

Daisy Simpson knows this lone excessively well. She has 17 antithetic wellness conditions including Moyamoya disease, which affects conscionable 1 successful a cardinal people.

The 34-year-old from Brentwood, Essex, dreamed of becoming an histrion erstwhile she was increasing up, but her world could not beryllium much different.

Daisy has been confined to her chamber for much than 2 years owed to issues uncovering suitable housing.

She was diagnosed with the disease, which fuses the brain's humor vessels, astatine Addenbrooke's Hospital successful Cambridge aft suffering a changeable and a encephalon bleed successful January 2021.

"Before each of this went drastically incorrect I was doing acting and theatre work. I ne'er successful my wildest fears thought it would beryllium this bad," she says.

Doctors accidental encephalon country could perchance widen her beingness but she would lone person a 50/50 accidental of surviving the operation. Without it, she believes she has little than 5 years to live.

Instead of being capable to bask that time, Daisy is stuck successful her chamber due to the fact that her wheelchair does not acceptable done the doorways successful her flat.

She cannot entree the bath unless carers instrumentality her done utilizing an bureau chair, leaving her "in despair".

"I consciousness dehumanised, I consciousness degraded, having to person intimate attraction successful a mounting wherever determination is nary privacy. I've been made to consciousness similar I don't substance and I consciousness aggravated I've been near similar this," she says.

"I can't person immoderate independence. By the clip I determination it could beryllium different twelvemonth and that scope for independency volition person gone. It is psyche destroying."

Daisy has been waiting for an adapted location for 2 years.

Brentwood Council says it has identified a spot but it requires extended enactment to conscionable her needs.

"The lodging concern is stealing my life. We cognize I've not got agelong near and to beryllium stuck successful this country each time is horrific," she says.

The assembly says it is moving with aggregate agencies to supply the champion enactment it tin and officers are looking for a suitable impermanent location for Daisy portion the enactment is being carried out.

"Nationally determination is simply a deficiency of societal housing, successful peculiar lodging for radical with disabilities," a spokesperson said, adding the assembly is trying to amended provisions crossed the borough by gathering caller assembly housing.

Alongside her conflict to get much suitable accommodation, Daisy says she has to enactment arsenic a task manager for her health.

As good arsenic Moyamoya disease, which puts her astatine immense hazard of further strokes, she has a respiratory upset which tin origin her to halt breathing, a bowel upset and benignant 1 diabetes.

Daisy is nether the attraction of much than 50 antithetic aesculapian professionals from 7 antithetic hospitals and assemblage teams crossed England, with nary cardinal constituent of interaction for her care.

"Things get missed and it is chaotic. People with uncommon diseases request a uncommon illness co-ordinator but I don't person one," she says.

Louise Fish, main enforcement of the foundation Genetic Alliance UK, says this is simply a communal occupation for radical with uncommon diseases and bully attraction co-ordination tin beryllium "transformative" erstwhile it happens.

"Rare conditions are often life-long and analyzable and radical surviving with uncommon conditions and their families request joined-up attraction from a scope of services and healthcare professionals to assistance them unrecorded their lives to the full.

"Sadly lone 4 retired of 10 children and 1 retired of 10 adults surviving with uncommon conditions person a attraction program mounting retired however their attraction volition beryllium coordinated," she says.

Daisy struggles to clasp carers arsenic they person to slumber connected a pull-out furniture successful the surviving room.

There are besides peculiar issues uncovering carers qualified capable to woody with her analyzable needs.

She relies connected friends who are present being paid to attraction for her, including household person Brian Kerr.

"I've seen Daisy spell from a truly progressive teen to the authorities wherever she is now, wherever she has a implicit deficiency of quality to bash things for herself," helium says.

"It's distressing. I effort and bash everything I tin to assistance but without the nonrecreational services acting arsenic they should, determination is precise small you tin do."

The Mid and South Essex Integrated Care Board is liable for Daisy's care. It says Daisy is successful receipt of a idiosyncratic wellness fund which is backing carers to supply her with "a important level of support".

"The section NHS continues to enactment Daisy to marque definite she has a bundle of attraction that meets her needs. The recruitment and employment of a attraction co-ordinator tin beryllium supported by the section NHS, but the last determination would prevarication with the patient," a spokesperson added.

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

Daisy believes the accent of her existent concern is unmanageable and she hopes she tin walk immoderate of the clip she has near successful a location that gives her much independency and privacy.

"Even if determination are fund cuts and things are stretched, humanity costs nothing. I don't consciousness cared for. I don't consciousness safeguarded. I don't consciousness similar a idiosyncratic immoderate more," she adds.