Taking on the NHS UPDATE

Well, this morning as my Twitter followers will know I had a meeting at the Central London Community Healthcare NHS Trust or the CLCH as it's more conveniently known as part of my campaign to get the NHS more accessible.

It follows some feedback I gave to PALS (Patient Advice and Liaison Service) when I had a bit of a bad experience at my local walk-in centre after the time I threw the boiling tea down myself...

I've been in touch with PALS before about the lack of accessible GP surgeries in my area, but after the whole not-knowing-when-my-name-was-being-called farce at the walk-in centre, I felt compelled to write again to see if I can help change things for people who don't hear.

And that's where the fab people at CLCH come in – they contacted me through PALS after my experience at the walk-in centre and wanted to hear my side of the story.

Fabulously, they are on my side and I really do believe that if the brilliant person I'm in contact with gets her way then things will change… for the better. But of course, it's not as simple as all that – there are departments, trusts, places where funding comes from, people to talk to and a whole host of rules and regulations to follow in our journey of making the NHS more accessible to deaf people.

But it wasn't just a one-sided conversation. She asked me some stuff, too.

She asked me whether I minded being singled out and helped in a public place such as a walk-in centre because of my deafness or whether I would find it embarrassing. My immediate response was 'No, of course I wouldn't mind. The pros of knowing what was going on and when my name was being called, would far outweight the cons.' But I wanted to know what you guys thought, too.

So tell me…

And then there's BSL... Signing is not my main form of communication but I need to know what it's like for those of you that really need interpreters in your appointments. How easy is it to get one? Do you pay? Does the NHS pay? Does it put you off making appointments? What are your bad and good experiences of this?

So tell me…

If you let me have this information, I can pass it on – I  can give it to the people who write the cheques, set the targets and make the changes. I can empower them with the knowledge of what would make life easier, healthier, more accessible, less stressful and just as good as we deserve.

You see, I can give my perspective, my thoughts, my ideas, but without your input, too, then I'll be creating a DG-tailored NHS, which while brilliant for me, might overlook a need that I don't have but you do.

So while I'm researching the various departments, trusts, and thingumbobs that make up the NHS, please have a think. Write with anything you think is important to deafinitelygirly@gmail.com and it'll help me build that picture.

Apparently deaf people fall into the 'Seldom Heard' category of people within the NHS, but I don't see why we can't change that. After all, the people we're dealing with can hear perfectly well. So let's go from Seldom Heard to Always Heard (with a little bit of nagging on the side) and get these changes made.

I'm excited peeps, and you should be, too.

DG
x

Thankful for my hearing

Today is Thankful Friday and it's pretty easy to work out what I'm going to be thankful for – getting most of what hearing I had left back…

After the shock of waking up on Wednesday and realising that the loudness of the Pavlov's Dog gig had brought on something a bit more long-lasting than just a few hours of tinny, muted hearing, I've never been more thankful than I am right now to have what seems like most of it back.

On Wednesday, I couldn't hear my television, I could barely hear the words my colleagues were saying and even using my lipreading skills I was struggling to work out what was going on.

It threw me in to quite a spin. It made me realise I've been taking my hearing for granted, focusing on my deafness instead. Now, I see what I do have in a completely new and appreciative light.

I have some hearing – this is wonderful. Sure, if a hearing person woke up and had what I had, they'd probably run around screaming in panic, but I like what I have. It's what I've always known give or take a dip or two in my teens.

This means I have mixed feelings about the fact I have an audiology appointment next week. After a four-year break from the whole thing, I recently decided that I should see what hearing aids are out there and if they can help me hear any better. 

It's not really about wanting to hear more, it's about wanting to get through meetings without feeling crashingly tired from having to rely on lipreading and it's actually a little bit about wanting people to know I can't hear rather than assuming I am being rude. After all, I'm proud of my deafness – I don't mind who knows I can't hear and I'd much rather they knew than thought I was simply ignoring them.

The thing is though, on Wednesday morning when I woke up extra deaf, the only thing I could compare it to was how I have felt in the past on taking my hearing aids out at night after a complete day of wearing them.

The last time I did this, I wept at the silence that met me… even though deep down I knew it was just because hearing aids had amplified everything more.

I guess I'm also proud of how well I do without hearing aids. Proud that I get by and the idea of relying on something that might break, get dropped down the toilet or lost (THIS IS ME WE ARE TALKING ABOUT AFTER ALL), scares the crap out of me. 

As I sit here typing this on the bus, I'm struggling to work out how to finish this blog – there doesn't seem to be a natural end to it, it's like a circle, which is quite appropriate really, because whether I get hearing aids, wear hearing aids and like hearing aids is also a bit of a circular journey with my existing hearing at the beginning and the end.

I feel incredibly lucky that I am relatively happy with the hearing that I have. Sure, I miss being able to hear things like violins, flutes, speech and alarms, but on a plus, this also means I cannot hear hungry cats and babies that are whining in the middle of the night and my neighbour when she goes into one of her high-pitched yelling moments…

If, four years on from the last time, there are better aids for me, then I shall definitely try them. Shall I definitely try them?

And there we go, I'm right back where I started.

Which isn't really a bad place to be.

Happy weekend peeps.

DG

The gig that made me deafer

This morning I have woken up deafer than ever before, and it's all my own fault.

I went to a Pavlov's Dog concert and didn't wear earplugs.

I DON'T KNOW WHAT I WAS THINKING… I mean I always take earplugs but on this occasion I was so excited I didn't think about it.

*sad face

Last night after the concert it took all my willpower not to panic as I stepped out of The Borderline and found I could barely hear the traffic noise, and I went to sleep last night telling myself it'd be OK in the morning. It wasn't. My hearing on waking was tinny, my voice sounded robotic and I couldn't hear my TV at the normal volume.

A lovely audiologist peep on Twitter told me I probably have Temporary Threshold Shift, which normally disappears in 16-48 hours but in some cases can be permanent. So I now have a bit of a wait. A bit of a wait to find out whether, after years of doing everything to protect my hearing, I've stuffed it up in one go by attending a 70s prog rock concert.

*weeps

The only small mercy is that Pavlov's Dog were amazing – apparently it was their first ever UK gig and they chatted and laughed with the audience in between songs. There was a hilarious mix of people there, too. From 50 year olds in suits who'd come straight from the office to hardcore ageing rockers with long hair, black T-shirts and faded blue jeans. There was also a man right at the front who was tearing his hair out with excitement at every song that began and headbanging the whole way through, which seemed a bit out of place, but I imagine out of the two of us, he may actually be the deafer of us this morning.

Anyway, on to other things – I have some more news in my quest to find out and solve the problems with accessibility in the NHS.

As you know, last week I went to see my GP to get a referral to my audiology department because I had dropped off their records, and he gave me a print out with details of how I could book my appointment online for this.

I almost passed out with shock!

Called Choose and Book, all you have to do is go to chooseandbook.nhs.uk and type in your booking reference number, date of birth and provided password and you get given access to the available appointments. No more getting a letter with a 1.30pm appointment and having to change it because that means missing a whole heap of the working day. I could pick and choose and get a 9.30am appointment at a time convenient to both me and my work.

Isn't that brilliant?

It's things like this that I want to know about. Things like this that need to be shouted about so that people know that the services to make things easier are there.

My first experience of Choose and Book appears to be a complete success – and perfectly timed, too seeing as I've just given my hearing a thorough beating up.

And really there's just one thing left to say:

WEAR EARPLUGS PEOPLE! WEAR EARPLUGS!

Hearing back from the Royal Free London

Despite my silence on here, I can tell you that I've been beavering away trying my hardest to see if I can help change the challenges facing deaf and hard of hearing people in the NHS. What I discovered though in my rants is that lots of you do have accessible GP surgeries and hospitals. One of these is the Royal Free Hospital in London and I was notified that it had a vibrating pager system by one of my fabulous Twitter followers.What's even better is that when I tweeted the Royal Free London, they got back to me and before I knew it, I was able to ask Jasmin Sirius of the Royal Free London NHS Foundation Trust a whole load of questions about what services they offer and why and here's what she said:

Could you tell me what service you use?

The Royal Free uses a vibrating pager system.

What inspired you to get it? Was it patient feedback or forward thinking?

We introduced this initiative in our audiology department. We previously used a number system where numbers were called out and patients would come forward when they were called. This wasn't suitable for our deaf or hard of hearing patients who would miss their turn. Also patients would stand up at the same time as sometimes they didn’t know which number was being called.

Could you give me a rough figure of how much it would cost?
We'll need to check on this for you.

How successful it has been?
Overall the service has been really successful. The system also means that if necessary patients could leave the waiting area for a while and come back when the pager vibrated. 

Do you have any other deaf friendly services?

Yes we have: 

• Information screens – these electronic plasma screens are placed around the hospital and display information.

• Main reception service – our main entrance desk function provides a 'front of house' facility to assist patients and visitors to their destination. The main entrance desk and telephones are fitted with induction loop technology. We also have a number of volunteers’ staff help desks at key locations to help patients find their way around the hospital. They are based in the main out-patient department and by the main lifts.

• Interpreting services – the trust provides interpreting services in order to respond to the needs of individual patients more effectively. During 2010/11, we provided interpreters for many appointments. This included face-to-face interpreting and other communication support. Telephone interpreting was also provided for appointments.

• Training – during 2010/11, we delivered 90-minute micro learning training for reception and other frontline staff to expand their understanding of physical and sensory disabilities. The training provided practical skills and knowledge on how to identify and meet access needs, customer care, etiquette and language. We are particularly pleased that almost all delegates stated the course was informative. To ensure our training fully addressed the needs of disabled patients, we invited patients with sensory impairments to participate in the training and provide feedback.

• Partnership working with seldom heard communities – the Royal Free is committed to working in partnership with patients and communities who experience health inequalities to help reduce inequalities and promote environments that are fair and free of discrimination. The trust set up its Equal Access Group in 2004. The terms of reference have since been refreshed and engagement with patients and local community and voluntary organisations from protected groups increased. The purpose of the group is to ensure strategies and practices are in place to meet the diverse health needs of protected groups who experience the greatest inequalities. An appreciative inquiry approach has been adopted providing an opportunity for members to share their successes while proposing innovative ideas about care delivery.

So you see, if one hospital can do it, then surely others can too. In fact, @cath_small a marvellous twitter peep told me that her GP surgery in London offers an online booking system and a snazzy scrolling text information board so you know when your name is called – how fantastic is that?

Feeling quite jealous, I went to see my own GP to get a referral to my audiology clinic, needed because I hadn't been for a such a long time. I got a friend to call and make the appointment – we used google chat to confer about what time was best for me – and then when I arrived, I let the receptionist know I couldn't hear. But by the time it was my turn, another receptionist was on the desk so I didn't hear my name called.

However, once I eventually got inside my GP's office, he was marvellous. I explained how difficult it was for me to get appointments and he assured me that my surgery is in line to get an online booking system but to get it involves upgrading the entire computer system that is in place, which in turn takes time. I also gave him some food for thought about how they could make it easier to know when your name was being called – so hopefully something will be done about that, too.

But what was most reassuring was that he actually listened to me. He didn't think that what I wanted was unreasonable – in the same way some cinemas still seem to think offering more than one subtitled movie a year is – and he was confident that things are going to change.

I too am confident that things are going to change, and I intend to play a part in this, so keep the information coming peeps – let me know if your GP or hospital offers accessible services and if they don't.

And when the day comes that visiting the GP or hospital is only as stressful as it is for hearing peeps, I'm throwing a party to celebrate – and you're all invited!

DG

x

MIssing Mabel, the marvellous cat

This is Mabel. She was one of my parents' beloved cats.

She died on Saturday morning after being hit by a car on the country lane in the idyllic English village my parents live in. The lane idiot people, despite the speed restrictions, still speed through.

Mabel was a pretty awesome cat. She was a rescue pedigree reject. She didn't make the elite cut so my parents collected her, her sister, and two others – one Christmas and brought them all home. It was the best Christmas ever.

From the start, they all had their roles. One was neurotic, The littlest was my Ma's lap dog, Mabel's sister was the typical cat and Mabel was in charge, quietly and confidentially. 

There was another thing, too. Mabel only had eyes for my Pa. Sure, she was happy with an ear tickle from us, a head scritch or a warm lap, but with my Pa, she loved him completely. She had her routine. She liked to sit on his feet. She liked to lie on his chest as he woke in the morning and when he whistled, she would drop whatever wildlife she was terrorising and come running in response.

I loved Mabel too. I loved that when I visited she would be the first on my bed when I opened my bedroom door. And when I came to leave, she'd take up residence in my suitcase lid in protest. 

So when a text came through on my phone on Saturday morning as I was driving to Cheltenham to see Jenny M, I was gutted to see the preview panel from its place on my dashboard telling me Mabel was dead.

It was from my very sad Pa. He had no other words.

On my stereo at the time was a song by Brandi Carlisle called Hiding My Heart, which is about meeting someone amazing but knowing they're going to disappear one day so you hide your heart so it doesn't get hurt. 

As wept quietly at the news, I remembered not only the words of the song but a conversation I'd had with MET man earlier in the week.

We were chatting about stuff and I mentioned that one of the reasons I was putting off getting a cat, or indeed any other pet, was because I was terrified of loving it and then it dying. Indeed, I once fostered out my goldfish Charlie to my Ma for this same reason.

But what I forgot here, was that I did already have a cat I loved more than anything, I had Mabel.

And, while the realisation that the bundle of white fur would never be around to disturb a FaceTime conversation with my Ma again was horrible, I also realised that I wouldn't have changed those moments for anything. Not knowing Mabel would have been a far bigger loss.

I know I'm slow in rejoining this party after quite a time away, but I can't be afraid of loving stuff just because I'm afraid of losing it. 

So through the sadness of Mabel dying also comes a clarity. It is time for me to stop hiding my heart.

It is time for me to get a cat*.

But she will never replace Mabel, for she was one of a kind.

*metaphorical or real

Accessible Olympics and the time the bus driver asked me out

Ok, so I've said what I love about the Olympics, but what about what I'm struggling with.

Honestly, and unsurprisingly, it's the accessibility. From the venue to the TV coverage it's really hard to follow what's going on. Subtitles are either slow or non existent and well that's it really.

Take the hockey last weekend. At the beginning the rules are explained on the big screen. A screen definitely big enough for subtitles and as the same thing is played at the start of each session, it's not like they needed a live subtitler. I'm largely resigned to commentary not being subtitled at a match because of the unpredictability of it, but on TV? Well it should be possible to make them better than they are. And the bbc website catch up facility has NONE. And seeing as I have a day job and can't watch it on TV when it's shown, this means watching it without subtitles online is the best it gets for me.

Why is that?*

*Ahem, BBC!!!!!

Anyway last night the loveliest thing happened to me. I worked late because I was meeting MET Man.

My Mac was playing up, I was stressed, I was cross, everything was taking longer than it should, but when I walked out of the office, I stopped and took a deep breath and reminded myself about something Fab Friend once told me. She said, lucky people aren't really lucky, they're just open to new things, meeting new people and they don't walk around with their heads down feeling sorry for themselves.

So, I got rid of the grump, smiled and walked down the road to meet MET Man.

'Beep'

I stopped, looked around and walked on.

'Be-beep'

'What is that noise?' I thought.

'Be-be-beeeeep'

At this point, amazed that I was hearing something above the drone of the traffic, I looked right and there was a bus driver waving at me.

I smiled at him, as he was very cute, and he yelled, 'Give me your number?' or at least I presume he yelled it as I was lip reading him at this point.

He then started to clutch his hands to his heart and blow me kisses while driving at the exact same speed I was walking.

It made me grin like a nutter – a man was declaring his love to me in the street… well kind of! 

I mean, if I'd come out of work tired and stressed and not resolved to just be happy, I doubt he would have even noticed me trudging along the pavement.

He tried to invite me onto his bus. It was going to Golders Green. MET Man was not in Golders Green. He was in Piccadilly Circus at an unknown location, but that's a whole other story.

I politely declined but was still grinning like an idiot. He continued to drive down the road looking at me, signing the word for phone and mobile in the hope I'd crack and hand him my number. And while I had no intention of doing this, it was rather lovely to think that someone thought I was worth almost crashing a bus over.

In the end however, I had to cross the road and of course his bus was right there at the red light. I waved to him and he blew me kiss after kiss, beeping his horn until I went out of view.

I really believe that it's the little things that can brighten your day. While I don't give money to beggars, I always smile at them because it must be horrible to be ignored day in, day out. If an old lady is walking up my street, I say good morning. There's one lady I see most days and the first time I said hello, she jumped as though I might mug her, but now she's the first to greet me.

That bus driver wasn't to know I was having a crap day but he definitely knew he'd brightened it. 

Smiling costs nothing and it might actually make a difference to how someone's feeling. 

So, while I'm not suggestion asking out random people in the street from buses, let's all do the smiling part, eh?

DG