Life outside the medical ward

After an accident or diagnosis, the four walls of a hospital room may become your lifeline. The constant medical assurance, guidance, and information keeps you going until you’re discharged. Once you’re on your own, where do you turn for support?

Everyday medical professionals, from nurses to consultants, are supporting those who may be recovering after a traumatic accident or processing a life altering diagnosis. In the building that never sleeps, welcoming joy and loss, a hospital is a support system for those whose life has started a new chapter.

When you’re deemed fit enough to be sent home it can be a time of mixed emotions. You may be happy to get home to your own bed but filled with anxiety of how you will cope without the assurance of the medical team – leaving hospital is bittersweet. With a revolving door of in and out patients, care after discharge can slide.

WAITING GAME

Cradling your overnight bag and a mountain of self-help and information leaflets – you’re back to reality. Some patients may have a smooth transition while others may have a harder adjustment.

Emma Stirling, a health professional working in North Ayrshire Health and Social Care Partnership, felt the pressure that the NHS is under after being admitted into hospital in early 2017. After experienced seizures for the first time in her life, Emma was discharged from hospital. She was told she may have a brain tumour: information that would turn anyone’s life upside down.

“In Ayrshire and Arran there isn’t a huge amount of funding for neuro services in-patient. When I was in hospital I was told I would see a neurologist who then didn’t see me because I wasn’t on their list, then I was discharged home,” explains Emma. “The hospital then didn’t get back in touch with me for another six and a half weeks.”

Fortunately, Emma’s case was picked up by a neurologist in Glasgow – by chance.

“For me that was good that someone else had picked it up but, really disappointing that Ayrshire and Arran had basically told me that I had a brain tumour and sent me home,” Emma remembers. After her first seizure in May, Emma was diagnosed with relapsing remitting multiple sclerosis (MS) in August.

HELPING HAND

Crediting her medical background, Emma was spurred on to ensure an answer to the seizures was discovered quickly. “I knew I had to chase this up. I’m not sure if someone who didn’t have my background and knowledge would know to do that,” explains Emma. Since diagnosis Emma has received a mountain of support from MS-related services, her employer and a strong network of medical professionals who are on hand to help her and family members.

Many patients will not have the same understanding of the medical world as Emma, which results in some patients not receiving the vital after-care they require. The next point of call after leaving hospital – diagnosis and leaflets in hand – will be an occupational therapist (OT).

An OT supports out-patients with a variety of specialised disabilities or health conditions. Consultant occupational therapist Dr Jenny Preston, MBE says: “As an occupational therapist, it’s my job to support people to live with a health condition in the most positive way possible by allowing them to continue to do the things within their daily lives which are important to them

We offer a range of support including people attending follow-up clinics; visiting people within their own homes; visiting people within their workplace to help with any adjustments that may be required; or meeting with families to help them to understand more about the condition and what that means for their loved one.”

From the hospital bed to living in the now, at times it can feel like information overload. Hospital staff can point patients in the right direction to get guidance but, at times, talking about how your life has changed after leaving hospital can be the light at the end of the tunnel.

UNDERSTANDING

“Service users tell us that they want to be able to contact somebody who understands their condition and who can help direct them to the most appropriate support and information,” adds Dr Preston.

Since receiving her MS diagnosis, Emma has been provided with support networks and groups to attend from her GP, MS nurse, consultant, and workplace; and her medical background has spurred her on to use this experience to further her understanding of MS for other service users.

Emma has had a relatively positive experience since leaving hospital, but the road to diagnosis pinpoints that there are areas in need of improvement. “Post-diagnosis, I don’t think there was anything else that could have been done. Up to the point of diagnosis there are definite gaps from a neurological point of view. To leave somebody for all that time, when they’ve been in hospital and you’ve given them one diagnosis and then left them to it, that was a low point,” Emma concludes.

Leaving hospital can be overwhelming. It’s unfortunate that our NHS system is stretched which leads to failings in pre-or-post-diagnosis, but knowing that OTs are on-hand to provide guidance and care outside hospital is crucial. Leaflets can provide important numbers, but an OT can facilitate meetings with those who have similar experiences to share for improved recovery.

If you have recently been diagnosed with multiple sclerosis the MS Society can help, www.mssociety.org.uk or call 0808 800 8000

Disability charity Scope can provide guidance for the next steps if you are newly disabled, www.scope.org.uk 0808 800 333

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