"I feel as if she is being treated like a second-class citizen" - Julie’s story

Julie describes her sister Caroline as being ‘very expressive, with a wicked sense of humour’.  She loves being out and about, and despite being non-verbal, ‘if she doesn’t want to something, she’ll let you know!’

Caroline has a particular love for music (Stevie Wonder and Santana are favourites), pub lunches, and her beloved annual adventure to Tenerife; a trip they’ve taken as a family for the past 35 years. Julie became the main carer for her sister in 2009, after their parents passed away.

Because of her disabilities, Caroline experiences issues with drooling, coughing and choking. As a result, she’s prone to pneumonia and needs to visit hospital often; attending once a year on average for the last 14 years.

People with a learning disability face societal barriers and stigma in many areas of their lives. But it is in hospital – the very place where Caroline finds herself at her most vulnerable and in need of empathy and care – where Julie is most concerned about her sister.

Every time Caroline is admitted, Julie says, her condition worsens, and she’s treated differently because of her learning disability.

During one of her hospital stays six years ago, Caroline contracted sepsis and very nearly died; something which her sister believes could have been prevented, and treated much more efficiently, if her sister had not faced barriers in healthcare settings due to her learning disability.

"I’ve repeatedly raised concerns about the quality of care my sister receives but I’m paid lip service in return," says Julie. 

"Caroline isn’t treated the same as other patients because of her disability and I feel as if she is being treated like a second-class citizen.

"If a person without a disability was going into hospital with those [sepsis] symptoms, they’d be encouraged to get up and dressed. She can't do that, so it's the nurse's job to do that for her. You have to make sure that people who are non-mobile are treated in exactly the same way."

On the ward, Julie says Caroline is often left in bed - not dressed for the day, and ‘placed the furthest she could possibly be from the nurses’ station’, where any distress she might find herself in can’t be seen or heard, despite her being a high-risk patient vulnerable to choking.

She also complains of many hospitals simply not having the equipment to provide the most basic level of care to people with a learning disability, or enough training to deal with patient’s needs, thanks to various stressors on the system, and a shortage of specialist Learning Disability Nurses working across the sector.

"You've got a vulnerable person who's at risk of aspiration, and yet she’s the furthest she could possibly be from the nurses’ station. How can they hear that she's coughing, vomiting or in distress?’  They'll say, they haven't got the staff or they don't have a hoist on the ward but this is basic care for anybody. There's no excuse for this."

People with a learning disability live on average 23 years less than those without. Often, they aren’t understood, or risk having their concerns dismissed, simply because they communicate and express themselves differently to the average patient or may not be able to advocate for themselves.

Caroline had originally gone into hospital fit and healthy but was admitted after vomiting on coffee grounds and pulling out her feeding peg. From this point, her condition quickly deteriorated. When Caroline’s sepsis escalated, Julie was asked to agree to a DNACPR , which stands for "Do not attempt cardiopulmonary resuscitation." In other words, a do not resuscitate order.

“I was asked to agree to a DNACPR" Julie remembers. "When I went in and saw Caroline, I was shocked. It was terrifying. Caroline was non-responsive and almost comatose, Julie couldn't arouse her or get a response. The only movement her sister showed was going into seizures. She was clearly very unwell.

“She was very sweaty and very floppy. It looked like she was dead already. If you pick her arm up and drop it, even if she's asleep, you'd get some resistance, but we didn’t get that.” 

“The ward staff weren't confident that she was going to recover because once she gets a high temperature or a significant infection, her seizures go off the Richter scale… I said my goodbyes, went home and expected the call to tell me that she had gone."

Thankfully, the call never came. Caroline was given a course of intravenous antibiotics over the course of her 10-week admission, which helped save her life.

"When I saw her again, she was a little bit better and had come out from the worst. She was on intravenous antibiotics for quite some time, every couple of hours intensely for the first 48 hours and two or three times a day for probably the length of time she was there - around a 10 week admission in all."

But despite her gratitude that Julie is now doing well, unfortunately the family still have a lot of fear around what could go wrong again in the future for Caroline if she were to be readmitted to hospital, due to the series of horror stories Julie has experienced from Caroline’s previous stays.

These include:

• Being asked to agree to a DNACPR

  Too often, people with a learning disability have been issued with a this without being consulted or their family or carer being aware, and families have to fight to remove this from their medical records.
   

• Feeling that Caroline has been neglected in hospital

  She is often placed furthest from the nurses’ station and feels ignored; on one occasion she was even left for two hours in her hospital bed in soiled bedding from her ankles to her waist. Another example is being allergic to plasters but staff ignoring this detail from her Health Passport. Julie has seen plasters on her sister’s face which have blistered and scars on the top of her feet because of plasters being ripped off.
   

• Medical procedures being carried out without proper adjustments or pain management

  For example, Caroline is peg-fed but occasionally pulls the peg out without having the ability to put it back in herself. Once, Julie says, hospital staff put a stirrup in on the nose to stop her pulling it out, but it became embedded, and a scab went over the top. Because she is non-verbal, she can’t explicitly let the nurses know that she’s ill, distressed or needs help, and hospital staff didn’t deal with the situation compassionately, instead pulling it out abruptly and causing a great deal of pain. 
  
  Similarly, the family give another example of Julie coming in on the doctor’s request to see that Caroline’s hands were black. A cannular had gone in and tissued over, stopping all the blood supply to her hands and causing her fingers to turn black down to her knuckles. But Caroline had been left to deal with the pain by herself.