Back in the UK I nervously sat by the phone all afternoon as Jamie met Maria. Inna had sent me a text telling me Jamie had arrived, and that she would call me when they finally finished. I sat and waited, wondering what was going on; what was being said; how Maria was; and whether it was in fact possible for her to have new legs. Depending upon the actual disability, it wasn’t always possible to have prosthetics. There were a wide range of factors that can influence prosthetic prescription and, after a little research on the Internet, it seemed that the general health of the patient was always considered the first and foremost priority and for some frailer patients it is sometimes better not to wear prosthetics, as they could prove too difficult to manage and control. But we knew that Maria was in good health; she had to be fairly healthy and physically fit to beg on the streets as she did. No one in poor health could easily survive the Russian winters. We also wanted Maria to believe that these new legs would make her life so much easier and much more comfortable. She was now accustomed to mobility on her platform and so getting her to commit to a period of lower mobility when learning to use the prosthesis might not appeal to her. Also the condition and length of her residual limbs could also influence the choice of prosthetic used. Shorter, scarred and sensitive residual limbs are more of a challenge to fit successfully.
As I sat at home in the UK while Maria had her initial consultation with Jamie, I thought back to sitting in the boardroom at Össur and listening to how prosthetics have developed since Össur first formed the company over 30 years ago. Many cases that had proved to be difficult in the past, could now be successfully managed by a medical team, but the key player was always the prosthetic user themself and we hoped that Maria was willing and able to commit to a program of walking re-education and adaptation, if she was to use the prostheses successfully and eventually return to walking.
Finally Inna called. She told me how Maria had been completely bowled-over by Jamie’s care and understanding. When they first met, Maria was quite nervous and expected a lot of pain and discomfort, as that is what she normally got after visiting the Russian prosthetic clinics, but there was no discomfort and no pain, no harsh treatment and rudeness; she couldn’t believe how gentle and kind Jamie was through the whole examination. Inna translated as Jamie carefully measured her limbs and examined her back and pelvis. Maria’s residual limbs were in good condition, and the length of each limb was about 15 centimetres. She had good muscle strength too, but she had a marked scoliosis (curvature) of the spine and her rib cage had gradually rotated from the years spent on her wooden platform pushing herself around with her wooden block. This didn’t cause her any pain but it did concern Maria when they discussed her assessment. Jamie had asked Maria what she really wanted from her new prosthetics and, like any young woman of her age, Maria also really wanted to wear high heels. She wanted to wear skirts and tight jeans. She wanted to feel like a real woman. She wanted to walk and sit and get into and out of a car easily. She wanted to be able to use a train or a bus, and above all she wanted to walk with her son, holding his hand, looking down at him.
Inna and I felt so pleased that everything had gone smoothly and that both Jamie and Maria seemed happy. This was the first stage and it had gone incredibly well. If things hadn’t, our dreams for Maria and Maria’s dreams would have disappeared, but so far things were looking good, although, as I was to soon find out, it was certainly not going to be like that in the months to come.
***
It took a while for us to receive Jamie’s report as he had to fly to Mexico directly after his stay in Moscow. Every day we looked at our e-mail inbox, hoping that he would have the time to reply, and finally, almost three weeks after he saw Maria he sent his summarized report:
Date: Wed, 12 May 2004 17:32
To: “Robin Barratt” [email protected]
Subject: Re: Maria
From: jgillespie@Össur.com
Hi Robin,
I’ve only just returned from Mexico which ends a month of travelling. I’m now going to be in the UK until the end of May.
It was great to meet with Maria and Inna during my visit. My trip to Russia was very busy and time was a little short but I collected all the information I required and completed the report on trains in Russia while travelling.
I’ll have to send you the report on CD as the file is large. The pictures I took were in high resolution and are far too large to send via e-mail. Can I please have an address to send this CD to?
All in all I see no problems in working with Maria from a clinical point of view. There is quite a marked scoliosis of her spine and if anything prostheses may help to prevent this condition from worsening. Although it won’t be easy for Maria to use her prostheses in terms of high energy expenditure we can make her as comfortable as possible with good sockets and very good prosthetic components. Maria appears very well motivated to use comfortable limbs and that’s very important. This will be a team effort and Maria is the key person in this team.
I have some thoughts that I’d like to share with you. Some of these are just me thinking out loud but I’d like to hear your comments. Only some of these comments will be added to my report.
It seems as if Maria will have huge difficulty in travelling to the UK and that the prosthetic service will need to be carried out in Russia. I’m interested if [your benefactor] will still be prepared to provide assistance. If work will be carried out in Russia we can help find people who we would suggest carry out this work. If carried out in Russia I would make sure I’m available to lend a hand and make sure the best possible outcome is achieved. Many of the products from Össur are not so well known currently in Russia as many local products are used. The concepts and products are not ‘plug and play’ as in you cannot pull these off a shelf and use them effectively, they require good understanding of biomechanics and also modern socket concepts.
Maria’s lifestyle. I accept that the prostheses provided will not be used full time due to increased energy expenditure and slower mobility than as now. At this level of amputation it is very difficult to use prostheses full time. By providing prostheses I understand that it’s hoped Maria can change her profession. Her current lifestyle seems comfortable and I wonder if the prostheses will cause financial problems during transition between careers. If this is the case it may be easier to continue as now with an income. I would like to hear your views here.
It’s hoped that any prostheses provided will be covered financially by Össur and your benefactor There is the question of future sockets (section of the prostheses moulded precisely to the residual limb). It’s expected that within months slight adjustments will be required which is not unusual after long periods of non prosthetic use. These adjustments will increase comfort as small changes occur. Overtime however following these changes new sockets will be required; again this is usual for all limb users. The time before new sockets are required cannot be stated as there are many factors which would influence this. My question here is who will carry out these adjustments and new sockets? My concern is that over time if working with local prosthetist the socket design may slowly evolve back to the situation as now with the crucial alignment also not being followed. I’m hoping that if I have the opportunity to work with local prosthetist I can also educate them at the same time. We then have to hope they follow similar procedures next time.
Gait training. The prostheses that will be provided are some of the best in the world and to be able to use this as effectively as possible some gait training is required. I am aware that this is not a big thing in Russia following prosthetic delivery. Do you know of anyone in Moscow who could help here? This training is on-going and cannot be carried out in one session.
It would be great to get the opportunity to meet up if you find yourself in London. I’ll be around until the end of the month before I head out and about again.
Let me know if there’s anythi
ng else I can do to support this.
Thanks
Jamie Gillespie
Prosthetist
International Markets Össur Prosthetics
Inna replied to Jamie personally, as it was she that met him and had spend a while with Maria, getting to know her and understanding her needs and goals and ambitions. She thanked Jamie and told him that Maria had never received such kind treatment by Russian prosthetists. She told Jamie that yes, Maria would indeed have great difficulties getting to the UK and that Maria’s new legs will help her feel considerably more confident about her life and open up so many more opportunities and possibilities for her and, with our help, she could find a job and would not need to beg. Maria strongly believes that begging is just a temporary stage in her life as she is not a beggar by nature and wants more from her life. Plus she wants to get married one day and have more children. Inna also told Jamie about a clinic she had found that, with Jamie’s help and guidance, might help with ongoing medical support and gait training. Inna also stressed to Jamie that we did have indeed a promise of ongoing support for Maria from our benefactor and that we are also continually raising money for Maria too, to help where and when we can. Inna had also written to our benefactor explaining everything and a few days later received a reply saying that she was feeling good about the fact that Maria was being fitted in Moscow, which would certainly make things a lot easier for everyone concerned, especially Maria. We then received an email from the benefactor’s assistant asking how long the treatment would take? I wasn’t a prosthetist, and knew nothing about the industry, but I couldn’t imagine that things would be that drastically different in Russia than in England where she originally told us it would take a couple weeks. She also asked us how close to the clinic Maria lived as normally in England amputees generally do not stay at the clinic but have appointments every few days, and gait training is usually done whilst visiting the clinic. Physiotherapy is usually something that most new amputees will also have. On top of this, she asked about about Jamie; where he was based? Did he work for Össur? Was he a qualified prosthetist? Did he personally do fittings? She also asked about the limbs that Jamie will be recommending as, at that time, she was unaware of any high-leg amputee wearing prosthetic legs without body straps and seemed intrigued about the new developments Össur were having in that field and how it would benefit the work she and her charities were doing with other amputees. Lastly and interestingly, she told us that our benefactor was actually due to visit Russia on business and could she meet Maria? This was wonderful news and we replied, of course!
By bringing in Össur, Inna and I had, of course, saved our benefactor thousands of pounds, as she was no longer needing to supply Maria with the actual legs; the most expensive part of the whole project. All our benefactor was going to have to pay for now was the silicone covering that made the prosthetics so life-like, and any on-going support Maria was going to need once she had her new legs, plus any expenses Jamie might have for going out to Moscow to fit the new limbs.
Inna and I had arranged to meet Jamie in central London on the 7 June, outside Covent Garden underground station. I was really looking forward to meeting him. He had done so much for us already, more than we could have imagined, and he was truly dedicated to Maria. Having his backing and commitment meant we also had the backing and commitment of Össur and Össur had the funds to make some really good legs for Maria. She would be walking soon and that was wonderful.
Inna immediately recognised Jamie leaning against a wall opposite the entrance and rushed over to greet him. I was really pleased to finally meet him, and honoured, and warmly shook his hand. He said he only had about an hour spare and so we quickly walked to a café in Covent Garden, found an outside table in the sun and ordered three coffees. We sat chatting for a while and he told us of the plans Össur had for Maria and the possible dates for the final fitting. Jamie told us that, in his own time, he would personally go to Moscow and spend a week with Maria. All he asked for were expenses, which we were sure our benefactor would cover. He said he only needed a bed, nothing special as most of the time he would be at the clinic. Again that would keep the costs low as hotels in Moscow are generally quite expensive. We assured him that we our benefactor’s total support.
At that time, Jamie didn’t have a specific date when he could fly to Moscow but he said it would probably be early August. Two months wasn’t long, we had waited almost a year and Maria had waited a lifetime, so we could all wait another couple of months. We finished our coffees and, just as Jamie got up to leave, my phone rang. I quickly said goodbye to Jamie and answered my call. It was our benefactor’s assistant. As I watched Jamie walk back towards the underground, she told me that they had decided they were not going to continue with this project and that, for the money they would be spending on Maria, the charity could help a lot more children in other countries. I tried and tried to explain to her that our benefactor had promised, off her own back and not via her charity, that she would help, but she kept saying that it wasn’t the case, that they had now decided she wasn’t going to spend any money on Maria. Maria would have to settle with the legs from Össur without any silicone covering and it is doubtful whether any of the other expenses will be met either - they will let us know about that in due course.
Inna and I sat there shocked. We were so upset. Five minutes earlier we were talking to Jamie and felt over-the-moon and so positive about everything, and now we were told that none of it was going to happen because, for some reason, our extremely wealthy benefactor had changed her mind. How could someone so wealthy, so much in the public light, someone who says she is so preoccupied with helping others, suddenly turn round and decide on such an appalling, cruel thing. How could someone that says she really does care do something so uncaring and unkind? And how were we going to tell Maria?
Up to that time our benefactor had actually done not a single thing for Maria, even though she promised she would, we had done everything, all the arranging and planning and organizing; everything and it felt to us that she had just gone back on all the promises she made. As soon as we got home Inna and I wrote an e-mail to her, copying it to the Directors at Össur. I was angry and wanted our benefactor to see what she had done.
Date: Mon, 7 Jun 2004 14:41
From: “Robin Barratt” [email protected]
Subject: Re: Maria and conversation with Sonya this morning
To: [our benefactor]
CC: “Össur” , “Jamie Gillespie”
Following my conversation with your assistant this morning, literally just a few minutes after we had a meeting with Jamie from Össur, I feel I have to discuss the topics of the conversation in detail as she notified us that you will definitely not pay for the cosmesis and it is now questionable as to whether you are going to fund this project at all.
Maria is in the same position as you were many years ago, except she still wheels herself around on a wooden board and still begs on the streets to provide for her son. After all this time and planning, we cannot ask Maria to wear skeleton legs, but your assistant said she will have to.
When you first called us, after receiving our letter, you stressed that you will fund this project independent from your charities. We also confirmed this with you a second time just before Inna flew out to meet Maria, as we certainly did not want to promise Maria anything we couldn’t fulfill. On both occasions you categorically confirmed your commitment and promise to get Maria new legs. Your words to us were that you will get her the best legs possible as you said yourself that if she had poor uncomfortable legs she would never use them. These were your words.
Initially we discussed bringing Maria to the UK for a couple of weeks where she would have her legs fitted in the Dorset clinic, but we eventually decided that it would be much easier for Maria to have her legs fitted in Moscow rather than making the journey to the UK. You even instructed us to look for suitab
le facilities.
As you know I managed to get a commitment from Össur to actually supply the legs.
Now we have been told that you will not in fact pay for the cosmesis and it is doubtful you will pay for her fitting, medical expenses etc. Your definite promise and commitment to Maria has changed completely. Össur have agreed to provide the limbs, Jamie has agreed to work with Maria in Moscow for a week without payment and we have spent our own time and money flying to Moscow to take Maria for her first examination. We have all done this without question, hesitation or doubt and regardless of whether she did or did not have limbs given to her in the past.
Maria's Story Page 17