When you have a complex illness you can spend half your life in hospital. Long and frequent inpatient stays are common, agressive and difficult treatments can be tough on your emotional wellbeing, and multiple appointments a week can be exhausting. It is hard work living with a complex illness because many doctors have very little experience or understanding of rare diseases. A complex patient has a higher risk of neglect and unintentional harm from inexperienced medics and this makes self-advocacy a constant battle. It is easy to understand why complex patients can struggle with depression, anxiety, loss of friends and feelings of isolation.
I’ve been in hospital for nearly 6 weeks receiving life-saving TPN.* My entire digestive system has completely failed and I can no longer feed via my feeding tube. Feeding essential nutrients, fluids and fats directly into my heart saved my life following a sudden decline just before Christmas 2016. My heart will be “eating” for 16 hours a day, 7 days a week for as long as my body can stay alive. I am immensly thankful to be given another chance at life and the experience has motivated me to do more to help complex patients.
It’s Time Awareness Was Aimed At Doctors
There have been many awareness campaigns for rare diseases, EDS awareness months and every colour possible has been given a ribbon to make people aware of all kinds of conditions. But not many awareness campaigns are aimed at DOCTORS. What good is it if the general public understand a complex illness but the one person you need to take charge and help you during a medical crisis does not understand your condition? What if that one person who can help you has no idea that your veins will not hold up to any more needle attempts or that putting antibiotics down your feeding tube will cause you to lose the remaining ability you have to use your tube? What if you have been admitted because your digestive system has failed but the doctor on duty that day doesn’t understand that intestinal failure means just that, and they leave you for 24hrs without any IV fluids, telling you to “just drink more”. This is what I faced in the final weeks before my intestinal failure took my last remaining gut function. And sadly, it is not just me, but the majority of intestinal failure patients who deal with experiences like this all of the time.
It would be easy for me to limit my contact with difficult doctors when they cause me so much stress and anxiety. However, nothing is going to change if no one does anything to raise awareness and educate medics about the complex patient experience. I want to do just that – change doctors’ understanding of the patient experience for those with complex and rare conditions.
How I’m getting My Story Out There
From my hospital bed I have been working with a wonderful and dedicated journalist here in the North East to get my story out there. The piece was published on the Express North Magazine website and has been shared across Facebook and Twitter. The article was then published in The Northern Echo, a north east newspaper.
BBC Radio Tees will be sharing my story along with an interview with myself on Monday 30th January at 11am, and people have been tweeting celebs and TV shows to gain more interest.
I’ve already had doctors contact me to say they learnt something from my story and they are going to change their opinion and treatment of complex patients. Wouldn’t it be great if every doctor responded like this?
Care Packages For Patients With A Complex Illness
The other way I can help fellow complex and rare patients is to make long and frequent inpatient stays a little easier. When you are admitted to hospital frequently, it becomes your normal. Friends and family can be amazing support to begin with but a month into your third stay of the year, the liklihood of them continuing to visit regularly is low. As an inpatient in hospital it’s common to be bombarded with visitors in the first week with lots of gifts and essential items being brought in for you. By the second week it is down to immediate family and an odd friend to break the feelings of isolation and bordom. This is when lonliness, feelings of abandonment and anger at being forgotton kick in which can make your stay even harder. Stress and depression can make symptoms worse and effects on the body can include loss of apetite, increased pain, poor response to treatment and inevitably, even longer time in hospital. Lack of visitors can begin as soon as you are admitted for those who are in and out of hospital all the time. It’s easy for friends and family to assume you can cope fine or not realise how poorly you are because you have learnt to function better in hospital from experience.
My plan is to break this cycle for complex patients who spend a lot of time in hospital. I want to send these people a care package which includes donated gifts, tools and resources for improving hospital stays plus essential items to reduce some of the high financial burden an inpatient stay can cause.
I love it! How can I help?
If my story has inspired you and you would like to help either raising awareness or with the care packages you can do so by :
- Visiting and liking the Rural Teacake Facebook page and sharing relevant posts. You can also share the articles that describe my difficult experiences with doctors and what I am doing to change their understand of complex patients.
- Stay tuned to The Rural Teacake blog and subscribe to the newsletter. I’ll be posting regular updates on the care packages including how to donate items, fundraising and how to nominate someone to recieve a package.
- Follow Rural Teacake on Instagram for more updates and to see what happens day-to-day behind the scenes.
- If you see ads for funding opportunities please let me know via the contact page here or facebook. I will need funding to get the care package off the ground and keep it progressing.
- Get ready to donate items via the care package Amazon Wishlist once it’s live.
- Get your sewing machine out of the loft and your knitting needles at the ready if you would like to make a blanket(s), bed cardigans, feeding tube/medical covers, cushions and bags to store items in for the patients. You can start making these now if you are keen. Contact me here for more details.
- Keep an eye out for cosy soft blankets, pretty pillow cases and cushions. These can make a hospital bed more homely, comfortable and fun. For autistic people, using the same items every hospital stay can help reduce anxiety and guarantee that bedding will not cause sensory overload.
- You can help me start building the stock pile of essential items by purchasing products if you see them on offer.
Essential items include :
- Sanitary towels (winged, non winged, various strengths and night pads)
- Incontinence pads (both male and female, different strengths and sizes)
- Tooth paste, tooth brushes, face cloth, soap, facewash, combs, mirrors, moisturiser. (Sensitive or hypoallegenicntypes of skin pruducts/soap only please.
- knickers, men’s underwear, pjs, njghties, chemo caps or beanie hats (to wear when the person can’t wash their hair and for hair loss)
- Puzzle magazines/books, adult colouring books and pencils/felt pens, notebooks, writing pens, playing cards and other small games etc.
- Notelet cards, letter writing sets and thank you cards.
- Vouchers – amazon, itunes, supermarket (these can be used to buy items for the packages at a later date), payg mobile top-ups (various networks). Easy vouchers for patients who like hand-made gifts, fancy stationary and feeding tube/stoma covers.
- Childrens comics and activity packs for little ones whose Mummy or Daddy is in hospital. The parent can have some fun quality time with their child during visiting times.
- Financial contributions – I will be setting up a special not-for-profit charity account on Paypal to take donations. This will be used to buy items for the packages, printing costs for hospital passports/application forms/supporting evidence from patient’s doctor or social worker, p&p, token gift for neighbours or friends who are making a big difference for the patient by checking post, looking afternpets pets etc, and parking charge permits for carers/family of patients when suitable.
As you can see I have plenty to keep me busy for a while so any help would be greatly appreciated.
*I wrote this blog whilst in hospital but am now at home recovering and filling up my Netflix watch list
Vlogs will be returning as soon as I can get the hospital footage edited and uploaded. Keep an eye on the Rural Teacake Facebook page for live hangouts.