Monday, June 11, 2012

An 'ology' in Patient Choice #nhs #eds

On friday, finally, much my anticipated appointment at Voice Clinic arrived. It's not before's now just shy of 8 months since my voice decided it was not fit for work and packed up. I'm beginning to suspect that my body is conspiring against me in a non consensual piece of activism to prove that the 12 months time limit for Contributory Employment Support Allowance is a nonsense. This fits perfectly with the Coalition's claims of consulting disabled people about these reforms...campaigners can't find any of these properly consulted people...and my body's recollection of consenting to this is about as clear as the now ultra fashionable 'Leveson Dementia'*

Although its been almost 8 months to see the voice specialists, the NHS has been busy in this time. I've bounced around gastroenterology with a detour through ENT, respiratory medicine, radiology and rheumatology. Unfortunately I don't think these are the same 'ologys' my Jewish grandmother would have been proud to brag about. Ah choice. It's a wonderful thing in a modern health service. Politicians obsess over choice and 'rapid access to care' whilst those of us with the experience of actually being ill and needing services know the most important thing is to see the right specialist in the correct clinic. Sadly that is not something even the most expert patient can always handle well.

Back at the tail end of last year, I went to see my GP. Well, after a couple of phone consultations and courses of antibiotics I actually saw him. Being an expert patient I knew I needed to be seen urgently by speech therapists, so I requested referral. My GP put that referral through...but waiting lists for speech therapy frequently last longer than a I'm still waiting. My GP also made a prompt referral to an ENT specialist, which is standard procedure in acute, unexplained voice loss. Except choice reared its ugly head, and for some reason no-one's ever quite been able to explain, instead of receiving a choose and book form my referral defaulted straight to the local private sector provider. When I phoned them to ask to be put onto an NHS list that wasn't possible. So my initial appointment was at the local private hospital. I was suspicious that the charming chap who'd never heard of laryngeal malacia wasn't an ENT consultant but a GP with Special Interest at the time...which seems to be confirmed by neither of the two local ENT doctors I've seen since being able to work out who this man was. The private sector clinic tried to arrange a review to discharge appointment before I'd seen speech therapy, which was pointless, so I had to request to be taken off their lists and referred directly to the NHS clinic.

See, choice is great. When acutely unwell and unable to speak above a painful whisper what you most want to spend your time doing is phoning round a mix of private and public sector bureaucrats attempting to find out who's clinic you should be seen in, where and how long it might take to get there.

In between New Year and now I've been seen at three different hospital sites, with a fourth to add to the total next week. Next week takes the total of specialties to six including General Practice. I love choice! Imagine if I'd had the knowledge to make the choice of going to a specialist voice clinic back in November? Its such a shame that neither this expert patient or my GP knew back then that that was the correct choice. But, people who haven't previously had this experience happily also won't have the experience to work out they are in the wrong speciality or clinic so early on in the process and can be delighted with their options to choose

Back to the actual voice clinic. It was very impressive. At the local district general hospital there was the requisite dementing old lady sat in a wheelchair with a bored carer from the nursing home to accompany her. This is a standard fixture in almost all NHS clinics...possibly even paediatrics, as it'd be unfair to leave them out of the fun and it's not unusual to see a parked elderly person left alone for a while somewhere. The charming and clearly somewhat batty elderly lady was fascinated by the BendyBus and wanted to know everything about it. I didn't feel I really needed the carer's repeated demonstrations of eyes rolling and finger pointing to the head to tell me this old lady had lost touch with reality some time ago. But I was very much consoled by the old lady doing an identical 'she's nuts' performance about the carer every time she was distracted. The receptionist was also in on this waiting room game of charades, but she was obviously the type of NHS admin staff that never get the praise they deserve, demonstrated by her offering to make the waiting patients and carer a cup of tea, and going off to get us all drinks of water. Sadly, this kind of NHS support which has been relied upon more than anyone knows for decades is dying out. Not because people are unkind, but because it requires years working as part of a team for these invisible caring supports to be understood and put into practice. Shorter term contracts and staff frequently moving posts to cover any empty position might seem reasonable on a balance sheet, but it's at the cost of all the impossible to quantify caring touches that properly treated, fairly paid staff carry out daily.

I was in the waiting room for about 20 minutes. A new patient might have got cross and wondered what the delay was, but being an old hand I understood that part of a multi disciplinary clinic's function is to take time to review the notes and discuss before the patient comes into the room. I was seen by an ENT consultant, a specialist ENT nurse and two specialist speech therapists. The first thing I discovered was that the only reason I'd ended up in voice clinic was that the respiratory consultant had ignored the PCT's obsession with only allowing GP's to refer to consultants and managed to get the referral through himself. For some reason that makes no sense it costs significantly more for consultants to refer to other consultants than for GP's to do so. Which is a pity because I bet no-one factored in the cost of repeat GP consultations to make and chase the referral. Ah for the good old days when consultants were allowed to write a letter to other consultants.

The second thing I noticed was that this was another impressive example of a well run NHS team. Whilst funding and staff levels impact on all clinical services, across the NHS it tends to be the attitude of the consultant which dictates whether it's a happy, well organised clinic or not. When specialist staff from different disciplines work together regularly, like any other team they learn how each individual functions and thinks. This is really difficult to spot if you don't have a great deal of 'being a patient' experience but easy if you do. It's also difficult to know how valuable this knowledge is until you're in the middle of it. The ENT consultant led the medical questions, the speech therapists the functional queries and the nurse looked after all of us and the equipment.

A tube down my throat and up my nose later we were all still trying to work out what is going on. The consultant immediately endeared himself to me by admitting he knew very little about Ehlers Danlos Syndrome, then listening to and immediately grasping my explanations. His concern, a bit like my rheumatologists and my 3am mind's is that this has a very 'neurological' appearance to it. My tissues are generally lax and floppy, but I've developed very tight areas of muscle spasming too. For me, that fits with the clinical picture of EDS as I understand it, but it's a world away from the five minute 'its a joint disorder' lecture that older medical students learnt from. Fortunately this consultant was of the 'immediately gets it' species so it wasn't difficult for us all to explore the underlying issues properly.

There was alot of talk about how my 'amazing insight' would make this much easier a situation to address, and some assurances of hopefully being able to improve things a bit, but definitely no mention of full recovery. That was an elephant in the corner of the room dressed in a pink tutu laughing at us all! After 45 minutes with the multi disciplinary team, we had a plan. I'll have to go back for some special 'tube up the nose to video as you eat' test which sounds like the dinner date from hell. I'll also be seen by the speech therapists and then back in the next multi disciplinary clinic. I got the impression that the consultant was delighted (in an appropriate way) to have an 'interesting patient' to think about.

So hurrah for patient choice. And thank goodness for a consultant who wasn't supposed to refer me to another consultant on the basis of cost not only did so, but knew which choice to make for me.

*Like Lewy Body Dementia, only much rarer and soley induced by judicial questioning.


Stitched Together said...

My old consultant wanted to refer me to specific keyhole surgeon so he wrote directly to the consultant telling him all about me and how urgent it was that this new consultant see me himself. He then copied the letter to my GP and told him to refer me to the new consultant. What a palaver! But luckily this method of multi-pronged referral worked and I quickly saw my new consultant. This ridiculous system creates so much more paperwork and delays and places where your referral can disappear down a back hole.

I'm so glad you FINALLY got to see the right team.

Jan said...

"The consultant immediately endeared himself to me by admitting he knew very little about Ehlers Danlos Syndrome, then listening to and immediately grasping my explanations."

Oh how I love that kind of healthcare professional! They're worth their weight in gold, and yet at the same time, that attitude should be standard. I hope they get somewhere with this, BendyGirl. At least it sounds like they're trying their best and taking it seriously.

BubbleGirl said...

When you're in for the "more tests" phase, have them check out your hyoid bone. It is a floaty bone distantly attached to other bones, and mostly held where it should be by muscles. It may be that it's dislocated, or just "not sitting right." Since the bone is normally floaty, it may be overlooked, especialy in someone who is extra-stretchy.

(I'm not suggesting this is the only cause of your issues, however, just a possible cause for some things)

I really hope they find what's causing the problems. And I also hope it's something fixable.

Good luck!

Achelois said...

I think I may have said this to you before but when my daughter was 1 and a half she suffered with similar in that she lost her voice to that of a whisper. It went on for so so long. In the end (pre-EDS diagnosis)it was decided that because she was a prolific chatterer she had worn out her voice box. She didn't shout by the way we are not a shouty family. As an aside I have tried shouting and am not successful despite the strong urge to often, at times in my life! If I shout nowadays this results in an episode of choking that hurts big time and then immediate loss of voice. I used to have a half decent singing voice also now singing is in my head for the tune is there the voice not.If that is the area causing the problem. Anyway I digress, to be told that one must encourage ones toddler not to talk is a bizarre instruction for a parent. It was thought that she chatted too much and had simply worn out her voice box! We had to withdraw her from nursery for some time and developed weird and wonderful games involving prizes to see who could not talk for the longest, to be honest it was 20 years ago so a lot of the detail has gone and I would urge anyone who has a child with EDS that they keep a journal because so much, later becomes relevant that it would I am sure be helpful. A year later things improved and we remember it as that time the doctors said she had worn out her voice box!
I have just seen a speech therapist who I must say was one of the nicest health professionals I have ever encountered, for choking and swallowing issues I have and have had since I was born. Much more simple investigation than your specialist team but she performed a simple swallow test watching me drink a glass of water or should I say sip. She has noted that I have a delayed gag/swallowing relflex(s)probably due to lax muscles. Ta da. I do everything already that she would have suggested and foods to avoid and is suggesting a prescription of a drinks thickener. Anyway this is not to do with loss of voice really is it. I have had a camera already down my throat via my nose for a matter related to my ear. The consultant for that merely raised his eyebrows when I said when I eat it feels as though the food goes into my ear from my throat. I wish I had mentioned this to the speech therapist. Oddly I was referred via my OT and was seen within three weeks of referral! Why I said all that random stuff about my daughter and I I do not know. At the top of my meds I am afraid tonight.
BG I sincerely hope your voice returns. It must be traumatising emotionally in reality to adjust. I know you are brave and have endured so much and face adversity with a strength of character I wish I had. I really really really hope this team can help. Good luck BG x

Achelois said...

Oh I forgot in all my ramblings to say has acid reflux been mentioned at all in relation to exacerbating laryngeal malacia? x

Anonymous said...

""For some reason that makes no sense it costs significantly more for consultants to refer to other consultants than for GP's to do so"

Wrong. It is just that it seems to cost a lot if consultants make referrals to each other, as they have become so sub-specialised. Thus, if you had happened to mention, whilst there, that you had a rash, he/she would have referred you to a dermatologist, whereas you might well go back to your GP, who MIGHT well be able to sort it for you. (Cost to NHS Nil, as opposed to c £150 for a new dermatology referral- and yes, the costof a GP consultation is nil, as they are paid c £70 per patient PER YEAR regardless whether they never see the GP or go 50 times.

Anonymous said...

I am a 49 year old woman with EDS classical. Lost my voice for 3 months last year and only intensive speech therapy brought it back (had to pay privately as the NHS appt came through AFTER I had got my voice back - months later!).

As I am a teacher, my voice is part of my profession, so you can imagine my panic when I again lost my voice completely this week. I will probably have to yank out the credit card again to get any therapy any time soon. Apart from steaming and drinking water and antacids - anyone have any other advice for early stages?

Anonymous said...

To anon above, you should try to rest your voice completely if possible- so only speak when absolutely necessary. And if you do, make sure you're not straining over back ground noise. Drink lots of water and avoid alcohol and coffees. Don't smoke and try not to excessively clear your throat.