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SUESMAN

Hi Everyone - New here and dying to ask

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Just have to say that I feel that it is very much down to luck of the draw, considering Mick and I attend the same Limb Centre and our experiences have been so far apart.

I feel from speaking to a lot of people who attend said Limb centre that for every Mick, there are lots of people who are very unhappy with their fit and thier components and have certainly never been given micro processor or KX06 knees let alone a swim leg as well.

I understand that a lot of it is based on the persons need and ability. Fit however has to be down to the prosthetist. Belive me Mick, I have spent many a day trying to get them to get it right.

I will never understand it.

So Suesman, I do have a lot of empathy with Sue and wish her above all a good prosthetist.

Guys and girls, I'm going to make myself out to be a liar now, because for various reasons Sue and I have delayed our departure for 24hrs and Sue (bless her) has been fool enough to let me loose on the PC again - she really should know better!

Both of us are extremely grateful for all your input into this thread - the support, advise, words of comfort and empathy - so please, please, PLEASE, do not be offended when we say that if we hear one more time 'it's all about socket fit and having good interaction with the prosthetist' there will be a competition to see which of us can scream loudest. Try telling that to Sue, who begged and pleaded with the prosthetist, physio and Centre Manager to listen to her, that the limb(s) she was being expected to accept were uncomfortable, ungainly, unusable and bore absolutely no resemblance to the pretty coloured posters and literature that littered the Limb Centre waiting room. THEY JUST WOULD NOT LISTEN!

We're not talking about sockets that just needed a 'little tweak' to make them a good, comfortable fit here. On her current leg, the best of the bunch (Ha), she can fit her hand and forearm between the socket and her stump right down to the tip - and her stump has been stable for 3 years!

Lynne, I think you've hit the nail on the head, certainly Sue said "AMEN" when she read your post. Clearly what Sue has been the victim of is the limb centre prejudging what they perceived she needed and deserved Eg: '55yo (at time of amputation) diabetic, lost leg due to circulation problems - she won't want/need to do much - MINIMUM PRESCRIPTION, provided she has something to fill her trouser leg/skirt, she'll be happy'. Never mind what the patient wants or that right up to a couple of months prior to amputation she was extremely active with a passion for dancing and walking. GOD THAT MAKES ME SO BL**DY ANGRY!

Who's to say the previous patient hadn't just taken delivery of 15 or 20 grands worth of leg and when Sue was wheeled in the Centre Manager took one look at her case notes, rubbed their hands together and thought "Great, we can grab back some of that overspend here". I thought the NHS was created to make medical care equally available to all, I haven't seen any evidence of that in Sue's case. Yes she's a diabetic, yes she's (now) 60yo. Does that in any way diminish or preclude her from a right to walk given that the technology is available to facilitate that? NO, IT SHOULDN'T, BUT CLEARLY IT DOES IN THE EYES OF NHS LIMB CENTRES. Thinking about it, that prejudging mindset quite possibly played a part in the funding application being declined i.e. 'Why should we waste that amount of money on a lost cause'?

Sue is not some 60yo granny who is content with sitting in a rocking chair doing her knitting. This is a woman who's personality, energy and zest for life would put many 15-20 years her junior to shame. What right have these a**holes to deny her the freedom of mobility to exercise those positive traits?

I apologise for the expletives, but I am incensed by the treatment Sue has been subjected to and that's why I am determined that more of the same will not happen at Cardiff.

Very best to all of you - we really are going on holiday now!

SUESMAN (Dave)

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Is this what will happen here in the United States of America if the Universal Health Care becomes a reality?

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Hi All

Back from our hols, refreshed, renewed and ready to do battle again.

Whilst we were away the much awaited letter confirming the declination of funding arrived so for the benefit of those of you who have wondered what reasons were given I have transcribed verbatim below the pertinent paragraphs.

‘Health Commission Wales’s Individual Patient Commissioning Panel considered the request on the 23rd September 2009 but did not support the request. Health Commission Wales commissions artificial limb services for patients in Wales from the NHS Artificial Limbs and Appliances Services at Wrexham, Swansea and Cardiff. HCW does not commission artificial limb services from the Dorset Orthopaedic Clinic.

However, in discussing this case, the IPC Panel agreed that, given the particular circumstances of this patient, HWC would be prepared to support a referral for this patient to the HCW commissioned ALAS services in South Wales.’

If that’s not a statement declaring that HCW are totally blinkered and unyielding I don’t know what is!

I mentioned previously that Cardiff represented a 200+ mile round trip for Sue, but upon checking I’ve discovered that it is in fact 330 miles – as is Swansea. Sue is entitled to and will require hospital transport, maybe even overnight accommodation, given that we are talking around an 8 hour round trip plus however long an appointment takes. How much is that going to cost????

Somehow ‘BIZARRE’ doesn’t quite cut it :wacko: – or am I being a tad cynical?

More as this tale unfolds.

SUESMAN (Dave)

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Hi All

Way back at he beginning of all this I emailed Sue’s Limb Centre and requested under the Freedom of Information Act, costs budgeted for initial assessment and supply of an above knee prosthesis plus associated physiotherapy. I also asked how much was allocated for annual maintenance and at what frequency they would expect to replace the limb. Not wishing to reveal Sue’s identity I said they should assume the patient was a middle aged woman who, prior to amputation, was very active and wished to retain as much mobility as possible.

The reasoning behind the request was simple. If their figures came close to that of the private provider then I couldn’t see a problem with transferring funding. If (conversely), they were way off the mark that would be a fair indication of what we could expect of the NHS.

Well, after 6 weeks, plus 3 or 4 chasing emails and a letter from Sue’s MP I’ve finally received a response. I’ll let you decide whether it makes interesting reading before adding my thoughts at the end of this post.

I am pleased at last to be able to provide you with the following information provided this afternoon by colleagues in the Artificial Limb and Appliance Centre.

Cost of prosthesis – Componentry £1050.00. Cosmesis £90.00

Physiotherapy input after fitting –– Initial assessment 1 hour duration, present would be Consultant, Prosthetist, Physiotherapist, Clinical Nurse Specialist, Clinic Nurse and possibly Occupational Therapist.

1 hour casting appointment with Prosthetist.

1 hour fitting appointment with Prosthetist

1 hour delivery appointment with Consultant, Prosthetist, Physiotherapist and Clinical Nurse Specialist, Clinic Nurse.

On going Physiotherapy is dependant on the individual, however, it usually comprises of 2 hourly sessions per week for at least 6 weeks.

Full morning (e.g. 4 hours) of Technician for production of the limb from casting.

Maintenance costs –– Averages between £200.00 – 300.00, but this is very dependant on lifestyle

Possible replacement after 2 years as componentry only guaranteed for that period of time

Please bear in mind that these are estimated figures and a further breakdown is not available.

Unfortunately colleagues have not provided me with the hourly rate for the members of staff involved in the process but I thought I would send you what they have already provided. Can you confirm whether or not you require these figures?

Once again I must apologise for the delay in responding to your request but as you may appreciate my office is wholly dependent upon the departments which hold the information sending it through in a reasonable time.

My thoughts are:

  1. There’s no mention of the socket – interesting that they should omit the most important and (arguably) expensive part of the limb.
  2. The componentry is around 50% of that quoted by Dorset Ortho. Ok, there could be an element of purchasing power coming into play here, but half the value…Hmmmm?
  3. £90 for a cosmesis!!! What in God’s name are you going to get for that, a can of easy foam and DIY mould?
  4. 29 man hours to assess, produce and train someone to use an above knee prosthesis! Can someone who’s been through the process tell me if that’s a reasonable estimation?

I have written back requesting the hourly rates and/or a price for the socket. Let’s see what they come back with.

SUESMAN (Dave)

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1 hour casting appointment with Prosthetist.

1 hour fitting appointment with Prosthetist

1 hour delivery appointment with Consultant, Prosthetist, Physiotherapist and Clinical Nurse Specialist, Clinic Nurse.

On going Physiotherapy is dependant on the individual, however, it usually comprises of 2 hourly sessions per week for at least 6 weeks.

Full morning (e.g. 4 hours) of Technician for production of the limb from casting.

This is all socket related, the hardware is modular and takes very little time to put together, the cast is what is taken of the patient, to produce a positive for draping of a socket, I imagine the 4 hours for the technician is time for this. I note it doesn't iclude any time for the Prosthetist to make modifications to the cast and reduce it as would be required, maybe they count that in with the appointment time?!

I'd say these times are probably minimums, if all goes well. I'd imagine they can all stretch out quite a long way if something doesn't go right.

As for the difference in the hardware costs, you'd have to know whether they are quoting like for like, whether it's exactly the same hardware... otherwise it's not fair to make a comparison. Though if it is like for like, it gives you some idea of what the mark up is for the private practice!

I know it was a lot longer ago and things may have changed, but I had less physio than that when I first became an amputee. I'd say those times were about right, but I had two legs.... not having been in the system so to speak for a while I maybe out of touch, but it's still possible to get two limbs if justified, and may be the norm in some places still.

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Hi Suesman

I agree with what OBL is saying. It is the socket which is important, the other components are all modular and obtainable off the shelf.

Also the costings you have been given, may be for the ideal scenario of having a prosthesis fitted and everything going to plan, but in real life we are all different and things do not always go to plan, so I think these costings would be more the ideal than what perhaps may turn out to be the norm. Plus if Sue, hasn't been walking for some time, she is probably going to need more than usual appointments for changes in fittings, for a while, once she gets mobile again, as her shape may change.

I note your comments about the cosmesis costings, not sure if the cosmesis is an issue, but a lot of us use 'foam' and find it works well, for me mobility is the priority, but have no problems with the foam.

Ann

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Hi All,

Let me start by apologising for the long delay since my last post, I do hope this thread hasn’t gone so cold that nobody notices or reads this post. I also apologise for the fact that I will be posting this same message to both boards/forums that I belong to.

There has and hasn’t been a great deal going on over the past few months, that’s to say lots of little things but no major event. I’ve still been ‘on the case’ – chasing Health Commission Wales via Sue’s GP for the promised referral, writing to Edwina Hart (Minister for Health) at the Welsh Assembly requesting her intervention, meeting with Sue’s local Welsh Assembly Member and MP Oh, and almost forgot, re-locating to Wales to be with Sue.

The net outcome of all this is that finally we have a first appointment for Sue at Cardiff tomorrow (12/02/10) where we will be meeting the Centre Doctor plus (hopefully) the head prosthetist – of whom we’ve had very good reports. I’m still awaiting a reply to the email I sent to Edwina Hart on 09/12/09 and have sent a reminder expressing my disappointment. And Sue’s AM (Assembly Member) has failed to obtain cost of a prosthesis from Wrexham ALAC, just a letter from the Chief Executive of the Health Board stating that prosthetics are ‘bespoke’ and therefore impossible to cost. Yeah, right!!!! They now know the name of the patient and (presumably) have access to Sue’s records, so the problem with coming up with how much they’ve spent on her is what exactly????? The mind boggles, if prosthetics are so difficult to cost how the hell do private providers ever manage to provide a quote?

Frankly I am still giving serious consideration to throwing this whole sorry saga open to the media, but am holding back until after our visit to Cardiff – wouldn’t want to muddy the waters too much if there’s a chance of a favourable outcome.

We’re heading to Cardiff with as open a mind as possible. Wish us luck, I’ve a feeling that it won’t be so long before you hear from me again.

Dave (SUESMAN)

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Hi All,

As promised, an update on our Cardiff visit follows and I have to start by saying what a pleasure it is to be able to pen something positive for a change – I don’t enjoy playing the Victor Meldrew character all the time, honest!

I never visited Wrexham limb centre, but from what Sue tells me the reception and attention she received at Cardiff was like a breath of fresh air and bore zero resemblance to her experience at Wrexham – “They actually listened to me and wanted to know my dreams, desires and expectations” she said, “I can’t believe it”!

I didn’t ‘clock watch’, but we must have spent some 2 hours talking with and Sue being examined by the centre consultant, head prosthetist, senior physiotherapist and nursing sister. They started by acknowledging that Sue had experienced a chequered ride thus far following a particularly traumatic history culminating in amputation.

The upshot, it was concluded that the best course of action was to start afresh. Sue will be casted for a new (suction suspended) socket – this immediately widened Sue’s eyes and put a smile on her face. The leg will initially retain the fixed knee and foot components – though the latter will be shaved down to match the size of her own foot – until she gets used to using it and then 2-3 months down the line they will look to component upgrades.

In view of the distance that Cardiff lies from us they propose that Sue stays with them throughout the process for three weeks – something that makes perfect sense and is totally agreeable to both Sue and I. A provisional date of 22 March has been set and it simply remains to be seen whether this positive and compassionate first meeting is borne out in practice – I have every reason to believe it will be.

Once again, thank you all for your interest and input. I will, of course, keep you posted on any developments – though I doubt there will be much to say prior to Sue’s return home around mid April when, as Sue has said, she will be WALKING – after a fashion (her words not mine) ha ha.

Dave (SUESMAN)

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SUESMAN {Dave},

Sounds great to me!! Finally you will have success. :smile:

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Hello,

I realise that I am coming to this very late and apologise. I also really hope that Sue is having a better time at Cardiff than she did in Wrexham.

I haven't used a limb centre in the UK for 3 years now as I've been living away in Asia but my observations are as follows:

1. The prosthetists in NHS limb centres, on the whole, whilst nice and helpful and everything that comes with that, just don't have enough experience to be really good at their jobs. The vast majority of prosthetists in the centre I used to go to appeared to be recent graduates who were getting their first few years of real life experience before moving off to new jobs with Ossur or wherever and more money. I completely understand this as the starting salary is crap at about GBP18,000 which, after 4 years of university, I certainly wouldn't be very enthusiastic about either.

2. This obviously means that they simply aren't going to be as good at their jobs as prosthetists with 20 years of experience. The world just doesn't work like that.

3. The right socket fit is of course crucial and is something that you just need to be very persistent about. If it doesn't fit right you have to tell the prosthetist and bloody well stay there for as long as it takes, then be willing to go back as many times after that as it takes. But sometimes you just don't have the energy for that. I used to live a 1.5 hour tube journey away from my limb centre and quite frankly often put up with a little niggle (or big niggle as the case might have been) instead of having to go through that whole awful rigmarole of travelling there, waiting around in some dingy fitting room while whoever else was there oohed and ahhed and compared who had which liner and why they didn't have one of what you had, spending hours and hours out of my working day trying to get the bloody niggle to go away by adjusting the socket with the prosthetist, getting to the stage where I didn't know whether anything had actually helped or not because I had lost all sense of what was right and wrong with my leg, and then spending another bloody 1.5 hours travelling home, only to realise often later on that same day that there was now something else wrong with the socket so I'd need to go back the next day and repeat the whole saga all over again.

4. So I can understand why and how Sue gave up.

5. But basically, everyone who works for the NHS in those limb centres (or certianly everyone I came across) really does want to help and really does want to get the leg right. And when it is right it really is worth the hassle. I still wear my second ever socket now and it took me and my prosthetist over 6 months to get it right. I'm going to feel like I've lost a child if I ever have to give it up. And in terms of all the high tech stuff, if you can convince them that you need it and will use it (and haven't gone over your quota of 3 legs or whatever it is - don't get my started on that), then they should strive to get them for you regardless of age.

6. Obviously this leads to the conundrum of if Sue hasn't been active for 5 years how is she going to convince them that she needs a leg for active people. But as far as that goes, she will probably have to spend a few months getting her fitness levels up anyway, so she probably doesn't need a really expensive high tech leg right now. For example, I am active and even though I'd say I'm really fit I am still struggling to get the most out of my running leg (which I had to pay for myself as the NHS including my PCT refused).

7. If you want cheap private prosthetic care come to Asia. I had my legs made in Hong Kong while I was living there for a fraction - and I mean a fraction - of what I'd have had to pay in England. And in Singapore where I am at the moment I go to a state of the art limb centre which is pretty much solely staffed with Western expat prosthetists and still pay much much less for my treatment than I would privately in England.

Right, that's my ten cents.

I really hope it goes well for Sue.

Fi

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Guys, Gals,

Pass me a piece of that ‘Humble Pie’ – NO, GIVE ME THE WHOLE DAMNED THING, I want to gorge on it whilst eating my words and thoughts on NHS limb centres – boy have Cardiff (Rookwood) ever done Sue (and themselves) proud and redressed her Wrexham experiences.

We arrived on Monday (22nd) afternoon and spent a very pleasant few hours together whilst Sue was checked into the rehab ward and met all the staff and her fellow patients. Sadly then I had to go home – I dearly wanted to remain with Sue throughout but finances couldn’t run to a 3 week hotel stay.

She was casted on Tuesday morning and by Wednesday afternoon they had her up and walking in the test socket. Since then it has been one long round of intense physio, starting at 1 hour sessions and quickly building until on Friday her last session of the day was 2.5 hours. By the end of that she was elated with the fact that she had managed to do 38 metres with the aid of a walking frame – pretty amazing IMHO for someone who, only 4 days previously, could just about manage to stand on her remaining leg for 10 minutes.

We speak daily over the phone and when I asked her how the leg felt she replied “It hurts”! “What, the leg’s hurting you?” “No, that’s so comfortable; I barely know I’ve got it on. It’s the muscles in my back and bum that hurt, Glutimus Maximus I think they’re called”. I couldn’t help but laugh “Of course they’ll hurt, the only work out they’ve received in the past 5 years is sitting in a wheelchair”! Bless her.

Anyway, I just want to say a public ‘Thank you’ to Ian Massey (chief prosthetist) Jo (head physio) and all the other staff at Cardiff (Rookwood) Hospital, for their professionalism and commitment in helping Sue realise her dream and thereby restoring our faith in the NHS. Above all I want to thank Sue for pushing through the pain and helping them to help her. We are both over the moon with her progress.

I’m off down to Cardiff over Easter to see Sue in action. It’ll be the first time I’ve seen her with 2 legs, how strange will that feel?

A final verdict will be posted once Sues home with her new baby. Until then take care.

Dave (Suesman) :biggrin:

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