Being on the other side of the hospital curtain – the worry of being a relative

I’m sorry I’ve not blogged for a few weeks.

For the past couple of weeks I’ve been seeing things from the other side, my sister has been quite ill. I won’t go into details as it is her business, and while I’m very honest and open about my own condition it wouldn’t be fair to talk about her.

All my life I’ve been the ill one, the one everyone worries about, is sent cards and flowers, the one taking phone calls in hospital beds – it has rarely been the other way around.

But in the last few weeks my sister (who often has coughs and colds but nothing drastic) has been really ill, so much so she needed to go into hospital and have an operation.

It frightened the shit out of me to be honest with you. (sorry for swearing)

It was weird hearing her drugged up on medication, talking to her knowing she was propped up on a hospital bed hooked up to machines, and going through the horrid nil-by-mouth all I want to do is sleep period.

I suddenly went from the one everyone worried about, waited to hear from, tried to entertain when bored, to the worrier and the one trying desperately hard to entertain even though I had no clue what to say.

And it turned out I was rubbish at it and felt totally helpless….I may as well have been on the other side of the world for all the good I did, thank god my parents were there.

Basically the tables turned and I got to experience what my sister has had to cope with during all my years of illness (and my mum and my dad, and my boyfriends over the years).

And I have to say it was a horrible eye opener.

When you are in hospital it is an awful experience: it doesn’t matter how good the care is, how kind and compassionate the nurses and doctors are, or how much people bring you to do, it’s bloody horrible and you’d rather be anywhere else.

I was always so envious of everyone else being able to work, leave, work, eat what they want, work, use real soap and be able to wash their hands with anti-bac and then leave the hospital ward to go home to  TV, a hot meal and their own bed. I guess I don’t really think I appreciated that when my folks left after visiting time they took the worrying with them and probably only got the same amount as sleep as I did through panicking about me all night.

While you’re there you know your family are going sick with worry, are trying their best to help and are going through it with you – but I guess I didn’t appreciate just how stomach churning worrying it was until Hannah was admitted to hospital.

Even though I knew there was nothing at all I could do and that she was in the best place, in safe hands etc, I suddenly felt really far away, like I needed to be there, but I couldn’t be.

Luckily my sister is home now, which couldn’t make me more happy. Having been in her shoes  I know how nice it is to get back to your own bed, food and teddy bears!

Her being ill has made me realise a few things, one is that I need to be less selfish.

When I first rang my mum when my sister told me she was in hospital she told me I needed to take care of myself as I couldn’t be ill to.

She’s right I need to start taking care of myself not just for me, but for my family, my boyfriend, my career and my life.

How I am affects everyone around me, but it takes its toll mostly on my family. I don’t want the first thing that pops into their head when they get a couple of calls off me to be ‘is she in hospital, is she ill’ – I want it to be what amazing news has she got, has she won and award, is she engaged?

 

I want my family to be able to rely on me not worry about me. So for everyone’s sake its time to start sorting myself out….I am well now so I shouldn’t still be thought of as the sick one and I don’t want to be thought of that for the rest of my life.

If my sister or my mum, or my dad get sick I want them to be able to rely on me, not worry that I’m too busy or fragile to deal with it. It’s time for me to start getting my priorities, which is my family in order, which means seeing them more often, staying in touch and appreciating them more.

I don’t know how this blog ended up being all about me (which I guess proves my point down to a tee) – so I’m going to shut up.

 

 

Campaign for better hospital food in Wales begins – join the fight

Today my official campaign to stop the slop finally got off the ground.

As you all know I’ve been banging on and on and on about NHS food for years – until a few weeks ago, starved and delirious, I finally snapped.

My mission is simple but will need a lot of support.

I want the Welsh Government to look at the food the Welsh NHS feed their patients, investigate and see if it is up to scratch.

Then I want them to give staff the right support and facilities to feed people (including tailoring meals for people with certain conditons and allergies) what they need to help them get better – instead of banging their heads against a brick wall and taking away full plates of food.

I know I will come under fire over this campaign – I am brutally honest about my negative experiences – but if it sparks improvements people can hurl rubbish my way and I will happily duck.

This is not about undermining the hard work of the amazing doctors, nurses and catering staff in the NHS.

I admire them greatly; they’ve saved my life; held my hand; stayed with me when I am frightened and gone above and beyond their jobs to keep me alive and strong over my many years of chronic illness.

They brought me back to life as a baby, and also gave me back my life from the grip of Ulcerative Colitis after so many years – for all of this I will never ever be able to repay them.

I am literally in awe of the NHS and the staff that work for them – but that doesn’t mean I don’t want to see improvements.

This campaign I hope will help them to do their jobs more easily and without having to endlessly deal with hungry, angry patients, who are not getting better because they are not eating properly.

My petition has appeared on the Welsh Assembly website and I need you all to sign it (if you want to of course).

Ludicrously I only need to get 10 signatures for it to be considered by the committee – which could mean I could ask get 10 people to agree AMs personally have to give free lollipops to donkeys (and if it is devolved) they would have to talk about it.

Please help me with my campaign, hopefully it can make just a little bit of difference for the greater good. I will not stop banging on about this until something is done – and I know you all would like me to shut up!

Petition: Food in Welsh hospitals

In the meantime please share your experiences, pictures of your Welsh hospital food, and anything which might help to build up evidence in this campaign.

Please send to @thestomabaglady or visit my facebook page to share your story.

 

 

 

 

 

A fussy or unfeedable mouth? Hospital food standards needed in Wales #stoma #lactoseintolerant #IBD

Am I just fussy? Is that why the NHS always struggles to feed me?

I admit I’m a nightmare date or dinner guest: I’m lactose intolerant and have an ostomy bag.

In fact I’m probably every waiter’s worst nightmare: some noticeably roll their eyes when they hear me whisper the dreaded words – I’m lactose intolerant, is that going to be a problem?

But restaurants have adapted, with their allergy menus, and are mostly excellent – so why not the NHS where my intolerance and Ulcerative Colitis was, after all, diagnosed?

When I’m well I eat a diet which would shock any stoma nurse – I live off wilted spinach; rocket; veggie sausages; all types of fish and mountains of avocado – apart from a bit of an addiction to jelly sweets (and no longer diet coke) and white wine, I’m a bit of a health nut.

I avoid sweetcorn, nuts, coconut (less recently learned), peas, bean sprouts, sprouts etc and anything not really chopped up like the plague – I have not eaten a curry in over 14 years after it being a smell that made me literally vomit on my first hospitalization for ulcerative colitis (it has stayed with me).

But when I’m not having a good day and my ostomy is playing up fibre is totally off the menu – even the skin on a jacket potato and a rouge mushroom can cause a blockage and make me throw up.

So, today my last blog post on food in hospitals ended up on the Mirror and Wales Online.

As a journalist I am used to writing the news – not being the news (it has happened once or twice after I had a right go about claims junk food caused Crohn’s disease).

Video: Junk Food Doesn’t cause Crohn’s

I have come under some criticism for what I said about the food I was presented with – or not presented with – in the Heath, but mostly the article has sparked discussion about people’s experiences with IBD and/or stomas and hospital food which can only be a good thing.

Some of the stories people have shared have been frankly shocking – and to me it is obvious something should be done both in England and Wales to introduce standards and to help the hard-working catering staff understand intolerance and patients’ needs.

In the next few days I am hoping that the Welsh Assembly will approve my petition calling on the Welsh Government to set Wales-wide standards for hospital food.

I want them to look at the amount of food thrown away, introducing menus, making sure patients are fed the right food based on their individual care, and give staff support and training.

Health is devolved in Wales – it is the responsibility of the Welsh Government – and I believe nutrition needs to be looked at. Looking at the 250 plus comments on Crohn’s and Colitis UK’s website a lot of people agree, and I’m not on my own.

But while I’ve got your attention I want to address a few things that the story misses out.

I’m not still in hospital 

Firstly I had ulcerative colitis for 14 years – was in and out of hospital most of my teenage and young adult life so far, and led a life mostly ruled by bathrooms until I had my surgery when I was 25.

I have an ostomy and it is permanent. I had my first operation to form Winnie (my stoma) over two years ago, and then, due to complications with the disease still being in my rectal stump, had her made permanent (my backside removed and sewn up last year).

For the past year I’ve been the fittest and healthiest in my entire life; I’ve done things I never expected and really embraced my life – it has been a miracle.

Running a half marathon with a stoma.

The out of the blue I feel extremely ill, with excruciating pain at the start of October and that’s when I was hospitalised twice without warning and kept in.

They didn’t know what was happening to me – i was put on loads of fluids, and antibiotics, which made me even sicker as they shouldn’t have been taken on an empty stomach. The dietician and stoma nurse kept telling me to eat, and were totally frustrated I wasn’t getting the right food to sort my output out.

I didn’t know I was going in, I live on my own, my family are in Lancashire, and frankly the majority of my colleges and friends wouldn’t know what to feed me if they tried – people just don’t get lactose intolerance.

This is not the first time this has happened; I’ve had varying experiences in Chester, and been offered bowls of milk for breakfast, stir fry and salad (not long after my operation) and live off dry tuna sandwiches for weeks (as that’s all they could think of) – but in England they did have menus so some time they got it right and it was excellent.

However in the Heath there were no menus, the ward had its own kitchen, what was on the trolley was what you got – if you couldn’t have any of it, well that was that – the dietician insisted to the catering staff that I was allowed to ask for cereal if I couldn’t eat any of it.

People have said why didn’t I go to the shop – when I wasn’t about to faint, or the staff were frightened I would because of my low blood pressure, I did go to the shop. However it was a WH Smith and as someone with lactose intolerance, and at the time on low res, I could only eat crisps and sweets – which obviously was pretty much pointless.

I did continuously tell people I was lactose intolerant, i offered to help, and pleaded to go on the Ensure drinks (which I eventually got), and kept telling the dietician I was scared of loosing weight (which falls off me in hospital) but unfortunately they kept running out.

Staff did their best 

In my job I have been accused of “single handily trying to destroy the Welsh NHS” – I trust you I am not.

I had the greatest sympathy for the catering staff at the Heath. It was the system that failed not them.

Blog: Nursing is still a caring profession

The catering guy was scared of coming to my bed by the time I left; he would creep over to me like I was going to pounce down his throat or perhaps try to eat him.

He always looked crestfallen at every bed who couldn’t eat the food, due to having had surgery, being on a low res diet, on liquid only – or frankly just not liking the look of it.

I felt sorry for him, even more so when he brought out the allergy sheet and didn’t understand it, insisting I could have the cheesy pasta, followed by cheesecake with ice cream – I obviously disagreed and didn’t eat it.

It’s time for action – but positive not negative

What I want to see is some constructive action.

I’m not looking to be fed with a gold-plated spoon, with British Bake Off style cakes, and caviar – just diet to be treated the same as drugs, fluid and put into the package of basic care.

nutrition is a key part of healing, but offering someone who has just had stoma surgery lentil soup, and a tuna sweetcorn sandwich or nothing as their first meal isn’t right.

Yes she had advice straight after her operation, but at the end of the day once you have had the operation it is an experiment and you should start slow – not with something that may just cause you pain and agony.

Please share your experiences 

So I would like to know about your experiences of hospital food – yes even the really good ones.

Let’s try and find out what’s going wrong and where it is going wrong.

And, why am I doing this, well I want my experience to mean something apart from loosing all my hard earned weight, it’s pointless me just sitting back and letting the next lactose intolerant or ostomate go through the same thing.

Oh, and next time I want to eat!

Free prescriptions with an ostomy – it’s about time my IBD has cost a fortune

I’m so sorry for not posting for the past few days, it has been unbelievably hectic at work. But after a day hiking up mountains and ransacking my flat, throwing out all the rubbish me and my partner have collected over the past year, I thought it was time to update you all on one amazing thing that happened this week.

I now get free prescriptions.

For the past 13 years I have paid through the roof to suffer from Crohns/Ulcerative Colitis. In fact the prescriptions have got so expensive I have had to rely on my parents to pay for the endless amount of green forms that I have needed to get filled in on an often daily basis. In fact my parents soon realised that it was more than worth shelling out the £104.00 for a prepaid prescription card. In fact paying up front for my prescriptions, instead of shelling out £7.85 for each item quickly saved both me and my folks a fortune…indeed just one month after paying out the cash we had got our monies worth after I was prescribed a shed load of painkillers, steroids, ensure drinks, suppositories, asacol – to name just a few of what the doctor decided I needed to shell out for – which would have cost around £80.

For people living with chronic conditions or who have children with illness prescriptions are too expensive. It’s that simple. If you have an ongoing condition simply buying your daily medication can tip your finances over the edge if your already struggling to make ends meet. I have no idea how families with one or more people needing constant medication manage to even put food on the table. And it’s not only the maintenance medication that needs to be forked out for every few weeks; it’s the emergency steroids, and the constant antibiotics, eye drops, haemorrhoids, joint medication, skin medication, creams, lotions and potions and all kinds of other things inflicted upon us due to our low immune system caused by our chronic illnesses.

I think if I’d kept all my prescription slips over the past 13 years I would be drowning in a sea of green forms. I don’t think there would be anywhere for me to lie down; I wouldn’t be able to cook, bathe or even sleep…let alone find the medication I’d paid my entire salary for to keep me alive. And I think by now – if it wasn’t for help from my parents and their amazing idea to get the prepaid card – both me and my whole family would have forked out way over £10,000 in money for my medication alone – it’s probably been about that much anyway!

If it wasn’t for my parents paying for a lot of my main prescriptions I honestly don’t know what I would have done. On a trainee reporters wage £7 plus two, three, four times a week would have been too much and as a student it would have meant eating baked beans straight out of the tin – that wouldn’t have been good for my IBD diet at all.

I’ll attempt to do a sum here – if I’d paid what it costs now £7.83 for one prescription a week (I know it used to be less but this is just to prove a point) for 13 years it would have cost:

ONE PRESCRIPTION PER WEEK = £31.32 a month (I think) eek my maths are not great

£31.32 x 12 = £375.84 a year

= £4,885.92 for 13 years

And that’s only one prescription a week – some weeks I still have five or six. I would probably say that until I had my ostomy last year I was probably averaging four prescriptions a week – which could go up to eight or nine – so that makes it more like £125.28 a week or £1,503.36 a year or £19,543.68 over the past 13 years. And that doesn’t even take into account my ostomy bags and accessories. Oh, and all the years of Infliximab and other infusions which were (not sure about now) paid for by the NHS.

So a couple of weeks ago, after seeking some advice from the trusty internet, my mum encouraged me to go to the doctors to see if there was any chance of me getting free prescriptions because of my ostomy. And there was. Because I have an ostomy and a fistula I am eligible to get free prescriptions. I know that most websites say that you need a permanent stoma, colostomy or fistula to be eligible for free persriptions, but my doctor told me to apply – and it worked.

Free from now on

And i’m not cheating, my ostomy will become permanent this year. And, you know what my Crohn’s is not going away. In my opinion anyone with this condition should be entitled to free prescriptions. I know we don’t have it as hard as the US, I won’t even claim to be medically bankrupt, but if I’d had to pay for three years of infliximab I would be.

And if things couldn’t get any better, the form says that even if your medical situation changes you can get free prescriptions until your card runs out – they last five years and for all that time all of your prescriptions, whether related to your ongoing medical condition or not are free.

It’s about time, that’s all I can say.

For more on free prescriptions if you have an ostomy or colostomy see http://www.stomawise.co.uk/lifestyle/prescriptions-medex

For more on prepayment certificates – they really are worth it – http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx

 

How to apply for a Medical exemption certificate

To apply for a Medical exemption certificate ask your doctor for an FP92A form. Your GP, hospital or service doctor will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from one month before the date that the NHS Business Authrority receives the application form.

The MedEx lasts for five years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed. If you don’t receive a reminder, it is your responsibility to ensure that it is renewed.

You can find more information about the application process and refunds on the NHS Business Authority’s website.