The Hypermobility Syndromes Association is a British charity which offers practical support and information for anyone with any of the hypermobility syndromes or people involved in their care. They publish a quarterly magazine called the ‘HMSA Journal’. I wrote an article for the ‘Have Your Say Section’ of the magazine which was published this week. I thought you might like to read the article too…
Spending time in hospital is unfortunate and difficult for anyone. But for those of us with a connective tissue disorder it can also be routine and normal. I’m 42 years old and I’ve spent about 15 months of that time in hospitals. That’s 3% of my life. No one likes going into hospital, but along with the many other problems we bendy people face, you have to learn to tolerate it.
I’ve had many positive moments in hospitals, where everything has gone to plan, treatments have worked perfectly, and I’ve had great camaraderie with ward mates and staff. I’ve left feeling far better and inspired about the new life I was going to build. But I’ve also stayed in hospital for months, when no treatment was helping and with no end in sight. I’ve fallen out with staff, had tests and procedures go wrong, and I’ve tried medications that made me more unwell.
Even if your stay is only short, spending time in hospital can be physically and emotionally exhausting. As well as battling your condition, you may feel very anxious, powerless, and struggle with a lack of privacy, dignity, independence and sleep. It sounds trivial, but boredom can also be a big problem.
Over time I have got better at managing hospital stays. Here are a few ideas which may help:
1, Research the hospital – All hospitals have regular performance assessments: infection control, staffing levels etc. The results can be found in the ‘Safety’ section of the NHS website. If you’re concerned, you can ask your GP to refer you to a different hospital.
2, When possible, avoid ambulances – Ambulances can take several hours to arrive and they aren’t very comfortable. When you’re unwell, being shaken around doesn’t help. There are benefits of course. You bypass A&E triage and the waiting room. Plus you can lie down. But a car or taxi is often quicker and always less turbulent.
3, Make yourself comfortable – This can be crucial for keeping a positive outlook. Try to improve anything which irritates you, such as changing a hard mattress. Surround yourself with as many home comforts as you can, ipod, laptop, your own pillow and duvet. Most hospitals offer TV and wi-fi (at a cost). Hospital wards can be claustrophobic and often don’t smell very nice. So try to get outside every day for some space and fresh air.
Fellow patients can be a source of fun and support, but also of stress and irritation that you can’t escape from. Maybe choose your friends carefully.
4, Be nice – You don’t have to spend long in hospital before you hear someone being rude to a member of staff. Patients often feel unwell and anxious. But that doesn’t excuse being rude to people who are trying to care for you. So try to be a patient patient and show staff the gratitude they deserve. But if you can’t do it for them, do it for yourself. Nurses are saintly creatures, but also human. If you’re rude to a nurse, the next time you need their help you might find you’re lower down their long list of priorities.
5, Be your own specialist – You get too much time to think and worry in hospital. So it can really help to feel part of the decision making process about how your condition will be managed. In a world with Google, Wikipedia and the HMSA forum pages, you have more information on your smart phone than most doctors could know. Learn as much as you can about your condition and any new medication, test, or procedure you’re scheduled for. Most doctors will listen to suggestions from well informed patients. So you could save yourself many problems.
6, Prepare to see your consultant – Opportunities to see your consultant may be limited. Write down any questions or suggestions you have and take note of the responses. Also consider having a family member or friend attend for advice and support.
Try to form a bond with one of your doctors. It helps to have an ally on the team and a contact for nurses to call if you need help or test results.
7, Self medicate – Most hospital wards prefer to dispense your medications so they have a record of what you’ve taken and when. But some are open to the idea of self-medicating if agreed with them first. After all, if you self medicate at home, why not in hospital? It reduces the risk of medication errors which can occur in hospitals and maintains some independence.
8, Self catering – Your body burns more calories when you’re fighting an infection or recovering from a trauma. Hospitals work hard to provide a nutritious diet, but if it’s not of the quality you’re used to why not supply your own? I’ve seen patients have Sunday lunch brought in, pizza, once even shark fin soup!
9, Weekends – Weekends can be difficult. Nursing levels remain the same, but almost every doctor evaporates about 5pm on a Friday. Try to ensure that all medications you need are prescribed on a Friday, in enough quantity, and are present on your ward not locked in the hospital pharmacy.
The Dr Foster annual hospital guide shows a 20% higher emergency mortality rate on weekends and a 24% higher mortality rate for routine surgery on a Friday. – So if possible, try not to need surgery on a Friday and only have an emergency during the week!
10, PALS – The Patient Advice and Liaison Service ensures the NHS listens to patients and helps resolve any concerns over their treatment. Contact details will be available on the ward.
Having health problems can be very hard, and needing to leave your home to get treatment only adds to that burden. You lose control of your life when you’re admitted into hospital and you put your fate in the hands of strangers. It’s a difficult process that everyone struggles with. But hopefully this article has given you some ideas on how to minimise the trauma involved and how to have some influence on the outcome of your stay.
But however serious your situation and however worried you are, there is only a limited amount you can do. When you’ve done all your research and taken every precaution, you need to remember that you’re the patient and trust those strangers around you. It’s not easy, but in every ward in any hospital you’ll find a group of naturally caring people who’ve trained for many years to join their profession, and they’ll do everything they can to help you.
If you’re going into hospital soon I wish you the very best of luck. You may face tough challenges and it’ll help to be brave and positive. If you can’t always do that, at least be nice, because the staff will be nice to you.