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SUESMAN

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About SUESMAN

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    Newbie

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  • Membership Type:
    Amputee
  • Amputation Type:
    RAK
  • Amputation Date:
    08-08-2004
  • Amputation Cause:
    Diabetes
  1. SUESMAN

    Hi Everyone - New here and dying to ask

    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)
  2. SUESMAN

    Hi Everyone - New here and dying to ask

    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)
  3. SUESMAN

    Hi Everyone - New here and dying to ask

    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)
  4. SUESMAN

    Hi Everyone - New here and dying to ask

    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: There’s no mention of the socket – interesting that they should omit the most important and (arguably) expensive part of the limb. 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? £90 for a cosmesis!!! What in God’s name are you going to get for that, a can of easy foam and DIY mould? 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)
  5. SUESMAN

    Hi Everyone - New here and dying to ask

    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 – or am I being a tad cynical? More as this tale unfolds. SUESMAN (Dave)
  6. SUESMAN

    Hi Everyone - New here and dying to ask

    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)
  7. SUESMAN

    Hi Everyone - New here and dying to ask

    Mick, oneblueleg, flip, ann and Lizzie2 Thanks for all your recent posts. Lizzie, I've got your PM thanks and have replied to it. Sue and I are off to Scotland tomorrow for 2 weeks of much needed R&R and to regroup and consolidate for the next step (pardon the pun) in the battle. Time is now running short before 'the off' so I can't do justice to individual posts at the moment - for which I sincerely apologise - otherwise I'll be in deep do-do with Sue for not coming to bed, I did promise an hour ago that I'd be there directly and she packs a mean right hook. However, Mick I will quickly say that your post in particular has reassured both Sue and I that the system is capable of providing good limbs. Unfortunately that only strengthens a sneaking suspicion I've had for some time that the NHS operates a tiered system whereby one person gets 3 good limbs - and I don't begrudge anybody that - whilst another struggles to get one, as in Sues case. More when we get back from our hols, enjoy the piece and quiet of my absence. SUESMAN (Dave)
  8. SUESMAN

    Hi Everyone - New here and dying to ask

    Lynne I don't know the reason(s) for the refusal at the moment, they will be detailed in a letter to Sue's GP. I'm always prepared to give anyone the benefit of the doubt and recall posting on this board that I am 'the eternal devil's advocate'. But when I hear the horror stories that Sue has about her treatment to date and see with my own eyes the evidence - her current leg (and I use the term loosely) - I am hard pressed not to be angered. Frankly, at the moment my biggest problem is persuading her to set foot inside another NHS limb centre. In the past Sue was on her own, and they walked all over her. Now she has me, and I have no intention of going in 'All guns blazing', but neither will I let them fob her off. What Sue - and any other amputee for that matter - wants and deserves is a comfortable (socket fit), functional (componentry, preferably not out of the arc) and aesthetically acceptable (not something that Ahab would frown at) limb. That's what we requested of the private provider - not some all singing, dancing, don't spare the bells & whistles, computerised limb - and that's what they quoted for. I see no reason why the NHS shouldn't be able to supply something comparable. Hence my comment about wanting to see what they are capable of. If they have the equipment, funding, expertise and compassion to produce a limb with a modern socket, current componentry and good cosmesis then fine. If not, then just like going into a tractor dealership to buy a car it would be an academic excercise. Both have 4 wheels on the road and 1 in your hands, but that's where the similarity ends. Anyway, as usual, time will tell. It could be argued that Sue's waited for 5 years to get to this point so what's a little longer? I just hope this refusal won't drive her over the edge to the point of totally giving up. SUESMAN (Dave)
  9. SUESMAN

    Hi Everyone - New here and dying to ask

    Hi All The verdict re funding a prosthesis for Sue is in and I’m afraid it’s a NO. They want her to attend Cardiff, the hub/chief limb centre for her area. Needless to say Sue is devastated. Understandably she has zero faith in NHS prosthetics centres and the prospect of committing to a 200+ mile round trip each visit for ‘more of the same’ isn’t exactly appealing. For my part I’m somewhere between seething and totally bemused as I can’t help but feel that there’s more than a little ‘public Vs private sector rivalry’ involved in this decision. They don’t want to admit defeat, or that a better service and product are available in the private sector. So they will happily subject their patient to more anguish in order to save face and money – though the latter is arguable. Well Cardiff, watch out! You’re just about to encounter your most demanding customer – ME! I will want to see evidence of the best they can produce and if Sue is happy with it then God help them if they try to palm her off with anything less. If, however, she feels that their best is still sub-standard then all hell will break loose. So people, the question is: “DOES ANYONE HAVE ANY EXPERIENCE OF CARDIFF LIMB CENTRE”? Forearmed is forewarned – as the saying goes. Thanks in anticipation of your replies. SUESMAN (Dave)
  10. I'm not unduly qualified to comment here, but I will pass on what the prosthetist at a private provider told Sue and I when he was assessing her for a new AK leg. At their request we had taken Sue's current (NHS) leg with us - even though she doesn't use it - which weighs (I'd say) around 8-10 pounds. She asked him "Is it possible to get a light weight leg, cos that thing weighs a ton"? Picking up the leg he replied "Not really much lighter than this, especially with a full cosmetic cover, though it won't feel so heavy with a good fit". I know that just confirms onebluelegs comment, but hope it's of some use.
  11. SUESMAN

    Crutches - Forearm vs Underarm

    Hi Lynne Thanks for your input. Sue already has a pair of forearm crutches and they can take my weight no problem, so that's not an issue. As stated in my previous post, I will be taking Micks advise and ordering a pair of aluminium underarms for Sue. At £25ish if she can't get on with them it's hardly going to break the bank. If they turn out to be the best thing since sliced bread then they will (I'm sure), greatly enhance her enjoyment of our holiday in a weeks time and taking both pairs with us won't be a problem. The answer to your PS by the way is North Wales. Thanks again SUESMAN (Dave)
  12. SUESMAN

    Crutches - Forearm vs Underarm

    fivestringcooper, Trailmaster Toby & mick, Thanks to each of you for your replies. Though none of you have said which if either are more stable it seems all of you prefer the forearm and as that was the type I used I think I can see why. However, as you pointed out Mick, I can't truly understand what Sue experiences on crutches - she too has pointed out the differnces of using cruthes with one leg instead of two. So I'm going to get the underarms and let her decide. Worst case scenario we end up with something to hang coats over in the cupboard. Thanks again SUESMAN (Dave)
  13. Hi All Having posted my first question to members (titled: Funding for private leg) on the introductions board I assume protocol dictates that any other topics I wish to discuss should be posted here, so here goes. For the benefit of those who haven’t read the above referenced thread my partner of 8 months (Sue) has been a RAK for 5 years now. Because of problems getting a functional prosthesis she has consigned herself to using a wheelchair and whilst (obviously) not being happy with this, cites a couple of nasty falls as the reason why she doesn’t like using crutches. It’s transpired that these falls were as a result of a family member and full time crutch user coaching her into over zealous attempts at ‘Swinging’ (as Sue terms it) too soon plus, from what she’s told me, I also blame her physio at the limb centre for not coaching her better, but that’s by the by. Personally I feel that becoming more confident and proficient on crutches would: a) Give her remaining leg much needed exercise. b) Vastly improve her mobility for short distances or where steps are involved. c) Restore some self esteem i.e. not having to look up at everyone all the time. As someone who was forced a few years back to use crutches for 6 weeks due to a leg injury, I felt sufficiently qualified to coach and gently ease her back onto them. In fairness she progressed from the first (clearly terror filled) hops to quite a smooth action pretty quickly. But after a few paces (for want of a better word), it’s as if she hits a brick wall. She tenses up then quickly develops cramping pains in her thigh/buttock and needs to collapse into a convenient chair. At first I put this down to largely unused muscles being shocked back into action. But now I’m wondering whether it’s down to memories of the falls and the fact that she doesn’t feel stable on the forearm, closed cuff crutches she’s using. I know there are conflicting views re forearm vs. underarm crutches and that here in the UK the NHS no longer issue underarm on grounds that they can damage nerves in the armpit – though I can’t help but wonder whether them not having to buy both types also figures in that decision. So guys and girls, I’d value some input. Do underarm give more stability than forearm? A pair of lightweight Axilla ‘Red Dot’ aluminium underarms seems to be around £25, no money at all. But I’d hate to see them gathering dust in the cupboard. Sorry for the ‘War & Peace’ length post. SUESMAN(Dave)
  14. SUESMAN

    Hi Everyone - New here and dying to ask

    Hi All Just to keep you up to speed. The application for funding for Sue's leg goes before her PCT's Exceptional Treatment Panel on Tuesday next week (22 September 2009). In addition to a very well worded referral from her GP there are strong letters of support from her Vascular Consultant, Diabetic Consultant and MP. If that little lot between them don't push the right buttons I don't know what will. Wish us luck. SUESMAN (Dave)
  15. SUESMAN

    Hi Everyone - New here and dying to ask

    Oneblueleg That reply was quick. I would be happy to discuss the thought process behind my comments re prosthetics costs, but as already stated I don't think this thread is the place to do it. You supply the electronic venue and I will happily join you. However, before going down that road I will say that having re-read both our various posts, we appear to be addressing different aspects of the same topic. You are talking componentry, which I interprit as parts made elsewhere, shipped in ready to use. These I tend to agree, whilst not cheap, aren't extortionately priced given that we're not talking mass market here and resultant economy of scale. I, on the other hand, am talking about the finished product, which in the case of Sue's leg is more than 4 times the cost of those components. Ok, there's a pyhsio element, but that represents around 3% of the total, hardly worth mentioning. The bulk of the difference is made up of socket and cosmesis and the cost of these (I suspect) is largely down to the expertise required to create them rather than the raw materials. Expertise or knowledge and skill are all intangible, so we've come full circle and simply changed the question slightly to 'What price knowledge and skill'? Believe me, I don't begrudge anyone making money. I don't look at someone driving a flash car and think "what did you do to deserve that"? Because clearly they did something different or better to me, and provided they didn't hurt anyone along the way good luck to them. I suppose what I'm highlighting here is that for all my research into prosthetics for Sue I am still fundementaly a layman. As such I'm having real problems coming to terms with a prosthetic leg costing the same as a good, mid range family saloon car - and you get a 3 year warranty with one of those. I know I shouldn't make such comparisons, but can't help myself. As to prosthetists, they supply a valuable (or maybe I should say invaluable) service - though the cynic in me adds, if you can afford it. Sorry to have discussed this here after I said we shouldn't, just found myself unable to stop. Oneblueleg, if you want to chat further on this subject then let's find another venue. Unless of course readers would like to open this up as a new topic? Cheers SUESMAN (Dave)
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