A tarnished reputation

[Lynn White]

I know, Ali, I know...

I am not getting at practitioners, as they have no control over the hospital system. Its the system itself that I am questioning and have for years. NHS hospitals in general are simply not geared up to fast efficient treatment of people in work. This applies across all types of medicine.

Also, the background of the thread here is that Andrew has always had excellent treatment via the NHS whilst many others have experienced months of waiting and this is the first time it has happened to his family.

All I am saying is that just because the system causes issues, we do not have to accept the system has to stay like that. As you say, things are made worse by current cuts, but again, this does not mean we simply throw up our hands and say things can never change.

Optics is a unique health section because it has been partly privatised since the inception of the NHS. Patients are aware that something has to be paid towards costs. It is all a matter of attitude.

For example, many patients I have talked to who are in favour of a form of voluntary variable sight registration have said they would be willing to cover the costs of that registration, so that it was cost neutral to the NHS. When talking to professionals, I have had the reaction that patients should not HAVE to pay for it.. that is against the ethos of the NHS but they then rapidly follow that by saying the costs incurred would mean nothing would be done. So, does that mean we deny patients change because the NHS cannot afford it, on the grounds of ideology?

Many patients are completely unaware of the ins and outs of the current system re contact lenses. They do not realise that they have the right to ask to be referred elsewhere if the hospital they attend cannot or will not offer them a more tolerable contact lens option.

I do also wonder what the new GP contracts will bring. The current issue of course, is that the High Street is spectacularly unprepared for dealing with keratoconics. As many of us predicted, concentrating CL expertise in hospital departments over the years has led to a demise in skill on the High Street. Th hospital system was fine if you assumed that we as a nation could afford it as infinitum. We could afford to have all the skills in one place. However, nothing lasts for ever and change is in the air. We all have to start thinking how we can change things for the better in the present economic circumstances.

Lynn

[Sweet]

Liz,

Moorfields hospital has started sending text messages to remind you of an appointment and they are asking patients to sign up for it. I get a message about 3 days before my appointment which includes a telephone number for you to call if you are unable to attend. This has been going for quite a few months now, which is good as the private clinic I attend has always sent them!

Love Claire X x X

[Lisa Nixon]

We had to change one of my son's post graft appointments in April because of the Ash cloud - we were flying from the IOM. He's supposed to be seen every three months. The first appt offered was 11 June - right in the middle of his night shift - he's a prison officer and does a week of nights every 3 months or so. Not only is it difficult for him to get the time off he'd also have had very tired eyes - not conducive to a best possible eye test. 11 June is also the end of TT week when practically every flight and ferry has been booked up for months by bikers. The next available "3 month appt?!" - 13 August!! And it's a Friday! I'm superstitious but we're still flying! Son's eye seems to be ok, had he experienced any problems I would have taken him over as an emergency.

Generally our hospital is pretty good, there is always the inevitable long wait whilst there but always well worth it. Our disadvantage is that we can't just hop in a car and drive there. We've used the ferrry a couple of times but it makes for one hell of a long day - out at 6 am and not home before 11 pm, and I especially get very sea sick. During the ash cloud the ferry was booked solid.

I won't go to our local hospital since I went a few years ago. There was something on my stitches that was really bothering me but flying to Liverpool to get it checked seemed a bit OTT. The locum swiped my eye with a lump of cotton wool. He didn't numb it first. I wouldn't swipe cotton wool over my eye under normal circumstances - and doubt anyone else would!! Especially one full of stitches!!!

Tubs

[Ladyburd]

Hi Andrew

i know this is an old post, but the issues you mention have happened to me on numerous occasions. If I listed all my examples I would bore you all to death.....

I have often thought of complaining & think about all the elderly or disabled patients who don't have the internet or strength of character to put their foot down & ask for something to be done about the substandard treatment - why does the NHS get away with such shoddy customer service!?

Have you had any response to your complaints or have you noticed an improvement in service? I ask this as I'm so fed up, I'm thinking of going private, but think why should I as I pay my tax & NI!

Cheers

Claire (Dr Ramesh, Gartnavel, Glasgow)

[Andrew MacLean]

Claire

We share the same consultant, and I have to say that I have never personally had any problem with either the hospital or any of the clinics I attend. I also think that my son's problem was not with the clinic per se but with the anonymous administration that did not notice that his appointment had been cancelled by one arm before another arm discharged him for not keeping the appointment.

In his place I'd have phoned somebody whom I knew by name, explained the situation and everything would have been ironed out. He would dismiss that as 'special pleading', and so chose to endure the inconveniences set upon him. You see, we really are different people and I am not sure that my approach is actually more noble than his.

I was at a clinic last week and arrived twenty minutes before my appointed time, was seen shortly after I arrived and was on my way out of the hospital five minutes after my appointment was due. I can't really complain.

Andrew

[Dolphin]

Hi all I am very sorry but I feel the need for a little rant.

Having had KC for many years, I have had good and bad experiences within the NHS. However, I have to say that I am extremely grateful for the care that I have received over the years.

The thing is, we tend to forget that the NHS is a non-profit organisation (unlike private care which most people cannot afford) therefore, I feel we are very lucky to have it. Many countries do not even have the most basic care that we just take for granted.

As for comparing, I am sorry Lynn; KC with things such as cancer I feel is not a very good comparison. If you do not get prompt treatment with things such as cancer then life expectancy for an individual can reduce dramatically. As far as I am aware even though KC can be debilitating at times, it is not a life threatening disease and like most blind or partially sighted people who cannot get lenses to correct their vision we KC sufferers do find ways to manage even if it is very difficult at the time.

As a nurse, I have experience firsthand how things run within the NHS and with all its faults mostly due to funding, I am very proud to be part of it.

I am not saying that I do not feel very strongly about improvements surrounding KC I just feel that we need to stop and think very strongly before we start running down the amazing healthcare system that we have. If we started to be more positive about it then maybe things might not feel so bad when they do go wrong.

[Lynn White]

Hi Dolphin

I guess your rant is directed at myself!

As I said in my posts, the NHS is excellent at dealing with acute conditions. You become seriously ill, the NHS will deal with that immediately at no cost.Where the NHS falls down is dealing with chronic conditions that do not need hospitalisation. Its not a criticism of the NHS. As you indicate, it is a matter of funding. Therefore, I was not comparing KC to cancer, I was saying that the funding for cancer was,quite rightly, way above the level directed at chronic conditions. That inevitably means that people with chronic conditions do not get the same level of funding as those with acute conditions.

When we talk about private health care, you have to remember that Government introduced private charges for eyecare in the 1950's. Eyecare, therefore, has NEVER been wholly free within the NHS since its inception.

You said:

As far as I am aware even though KC can be debilitating at times, it is not a life threatening disease and like most blind or partially sighted people who cannot get lenses to correct their vision we KC sufferers do find ways to manage even if it is very difficult at the time.

Let me get this straight. As a healthcare professional (and I have worked within the NHS on the High Street for 30 years as well as working in hospital clinics) you expect me to simply accept NHS beaurocracy rather than fight tooth and nail to improve the quality of life of my patients? That I should be content that people with KC can lose their jobs because of their problems with managing their condition? That they struggle to see when they cannot wear their lenses? That they may be months without vision whilst waiting for another hospital appointment? Just because it is not a life threatening condition?

I think not. I am quite sure if you saw something you disagreed with, as a professional, you would fight to correct it, if it affected your patients. That's all I am doing.

NHS provision is very variable across the UK. My posts on this thread were attempting to point out that just because some individuals have very positive experiences in the NHS, it does not follow this happens everywhere else. As a nurse, you will know full well of hospitals where care is less than stellar for one reason or another. It is the responsibility of every professional to do the best by their patients, whatever path that takes. At least, that is is how I see it.

This sort of issue does not reflect on the principle of the NHS.It rather means that we all have to be vigilant that the NHS fulfils its potential for everyone. In my mind, that means fighting to improve the quality of care wherever it falls down, for whatever reason.

You may not be aware that in the field of optometry, there is much co-operation between hospitals and community practitioners in providing shared care in the areas of cataract, diabetes, glaucoma and Low Vision. These practices are privately owned and they contract out services to the NHS. That is how eyecare works in the UK.

KC in the UK is hospital based. It was not always thus. 20 years ago, you could see your own optician and get your KC CLs through the NHS using the HES voucher. Returning to this system for at least stable KC might relieve the NHS of some of the economic burden as well as improving access to care for many patients.

Finally, I have lived abroad in an ostensibly 3rd world country and worked there as a professional, as well as having been a patient in their healthcare system. I have also visited healthcare facilities in many other countries and I feel it would be arrogant to assume the NHS has all the answers. We are also not "lucky to have it" - we PAY for it, via taxes.It behoves ALL of us to make sure it delivers the best care it can. If that means questioning the status quo, then so be it. It

It does not mean I criticise the people who make the NHS what it is.

Lynn

[GrandPaClanger]

Well said Lynn, spot on

[Dolphin]

Hi Lynn

My intention was not to directly aim anything at you. All I can say is I was caught on a bad day. I have to listen to individual constantly critisise the NHS on a daily basis and get abused by relatives who blame the front line staff for all the things that go wrong. If I offended you I sincerely apologise. I most certainly was not critisizing the work you do for KC sufferers. As I said I truly appreciate the care I have recieved.

However, there are a few things that I do have an opinion about, that does not nesessarily match with yours, but thats what makes life so interesting. I personally believe thast we are lucky to have such a great healthcare system and that even though there is a great deal of funding going to the more acute side, that I personally have experienced excellent care being given to individuals with chronic conditions out in the community.

I also would like to point out that I have experienced really low point throughout my time with KC but I suppose that seeing really ill individuals every day makes me reallise even with this disease that there are individuals that are worse off than me. I just like to try and be possitive because it helps me through tough times.

And yes you are 100% right I do fight with all my strength to make sure the individuals I look after get what they need to aid in their recovery.

As I mentiond it was not my intention to offend anyone or belittle anyone experiencing hard times with their KC.

[Ali Akay]

Hi Lynn

The idea of KC patients getting managed in the community by their own practitioners sounds good but is not without its problems. First you need to make sure the practitioner sees enough patients to gain sufficient expertise, and has access to the ever increasing number of fitting sets needed in modern KC practice from various RGP sets, semi-sclerals, hybrids, soft lenses etc. A practitioner seeing one patient a week can not justify investing in so many sets and will need a long time to gain sufficient experience in fitting various types of lenses. There is one hospital I know that hasnt got an in-house CL department despite being quite a large clinic. The patients are given an HES p form and asked to take it to any optician of their choice. To me, this is crazy as they have no control on the quality of service patients receive. I had one of their patients recently whose lens needed replacing and we've been told their new policy is to issue only one HEs p form per year! So, if the lens is lost/broken or fit has changed, patient may need to wait for several months! I would have thought their patients would arguably be served better if they had an house service and they can control the costs better. Although it may be inconvenient for the patients to attend hospital clinics there is the added benefit that if there are any concerns about the health of the eyes this could be discussed with the ophthalmologists there and then. Long waiting lists are unfortunately an ongoing problem, and needs to be improved, but this can be done without necessarily doing away with hospital contact lens clinics.