28 March 2012
I had a call first thing this morning from the local surgery saying that an appointment has been made for me at the Bishops Stortford hospital to have my cyst dealt with. No date but at least we can now organise It ourselves.
Then later in the morning, a call from Papworth Hospital, confirming that I still intended to come for my appointment. I suppose from time to time they lose a patient between appointments are just wanted to make sure that I was still in the land of the living. Then they asked the sort of questions you would expect from a first consultation, not the seventh or eighth. What I be collecting the Oximeter or should they deliverer it the Friday before? When I asked if they could confirm they had arranged for transport, they said they had no record of such a request, although everyone lovely seven or eight check-ups and use their ambulance service. You would think the by now they could record it envelopes as a matter of form.
‘ My lovely’ was going to London for the day and set off just after the 7.30 girls arrived, in order to give herself a good full day. Amongst other things she met o ur daughter-in-law, Kimberly, at the Royal Academy to view an exhibition of the German painter, Johan Zoffany (1733-1810) and then they lunched together. She was concerned that I would have. Long period between the lunchtime call and the the time she got home, so she organised one of the Ross Nursing team to drop in 3.30, for which, as it happened, I was very grateful.
Shortly before this 3.30 call, Rita, one of the senior office personnel for Ross nursing, came to see me to discuss the last evening call. Most in the beginning we had a 930 call as the weeks have gone by I’m gradually getting more fatigued and so we decided to change it to 9 o’clock. Ross nursing were quite happy with this and it worked well enough for the first few weeks since then seems to run completely awry most nights now. Most times they turn up at 9.30, a couple of times, at 9.15 but rarely at nine o’clock. Apparently Ross nursing are run off their feet at present and simply cannot get near permanent nine o’clock slot. The problem is that 830 is really a little too early, for two reasons. Firstly, I do not want another hour in bed as I can only just put up with the pain in my joints for the current time and secondly, but not of great importance, is that if we are watching the programme on television it is most likely to end at nine o’clock and we would always miss the end of it. Anyway, Rita says she will do what she can but in the meantime I will just have to put up with the later time.
The saga of the pressure cushion for my NHS lounger continues I cannot remember with whom I initially raised it, it may have been my MND team, in any case I was told that the right person to deal with it was my Occupational Therapist. Accordingly I made the request to her some weeks ago. Two or three weeks ago I heard from someone from the Cambridgeshire Community Service, who assured me that he would find the right person to deal with my request and would ask them to ring me. Yesterday, a lady called Jane King . from PALS (Patient Advice and Liaison Service) telephoned me clarifying my request as it had not been made very clear to them from the Cambridgeshire community people. As soon as I confirmed it was for a pressure cushion they said that will be dealt with by a referral from my Occupational Therapist. So that’s where I was, weeks later when I started. In any event apparently the cushions are provided by the same people who fitted one onto my wheelchair, Holly Wheelchair service, so I telephoned them any to learn that they had not received a,, request for a cushion for me. I then tried to speak to my OT but the telephone was out of order, so I must continue the chase tomorrow morning.
I friends often ask me how I spend my day having completed my blog and dealt with my e-mails, which usually takes until lunchtime. The amount of chasing and telephoning I need to do dealing with various pieces of equipment or medical appointments is very time-consuming and somewhere along the line I’m told that I must take a little rest which I do if time permits.
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