Friday, April 10, 2009

Supply And Demand!

Now seems as good a time as any to talk about the supply of medical equipment.

In the early years there were never any systems for supplying what was needed for Hari's use at home - in later years systems evolved but are far from foolproof - heavens they involve human beings so fools have a habit of messing things up!

Going back to when Hari was a baby, both she and her twin sister were on apnoea monitors at home. These monitors were attached to the baby with a lead. The leads never lasted very long - probably about a week - and there was no system in place for getting new ones. This was complicated by the fact that hospital and community would argue about who's budget should pay for the leads.

The only way we were able to get the leads at one point was for a member of staff at the hospital to steal them from stores and give them to us! Eventually another member of staff at the hospital got so fed up with the whole farce that she ordered a whole box of leads, when they arrived she re-posted them to our health visitor who duly presented me with the whole box!

When we no longer needed to use the monitors we had about half a box of leads left - what to do with them? I couldn't exactly give them back to the hospital without risking staff getting into trouble. I decided to keep them for a while and see if I could find another family who could use them. Before too long a family in the same road were issued with a monitor for their baby - I asked how they were managing to get leads and would you believe that they were having the same problems we had encountered? I gave them our left over stash of leads and swore them to secrecy about their source!

Similar problems emerged in relation to the supplies for Hari's NG tube feeds. We needed tubes and various enteral syringes plus litmus papers. Getting them was another matter!

The tubes we were using early on were supposed to be changed at least once a week - if we were lucky enough to get one a week! Syringes for putting the fluids down the tube were single use but we were lucky if the health visitor shoved a couple through the letter box every few weeks - so we had to wash and re-use single use syringes sometimes for months on end. On one evening the only syringe we had broke and rather than drive to Bristol with three children, who needed to be in bed, I phoned the local A&E to ask if they could supply us with one. The initial reaction was a definite NO - but the nurse then changed her mind and when I arrived at A&E she secretively pulled the syringe out of her pocket and passed it to me as if we were dealing with some terribly illegal contraband!

For a while things improved - we had a health visitor for a short time, Bernie, who decided to get the whole thing sorted - she rang their supply store and read them the riot act! After that all I had to do was ring Bernie and tell her when our supplies were getting low, she would ring stores and once she announced her name the man at the other end would say 'how many do you need?' and swiftly send the required amount.

Then there was the time it went from the sublime to the ridiculous. The end of the financial year was nigh and 'community' had some money left over that they needed to spend - so without consulting us they spent the lot on Hari's NG supplies. This might not seem too bad - but they didn't have enough room to store them - and made us take the lot at once - if they didn't have enough room to store them where exactly did they expect me to store them!

Of course we still had the problem of getting the litmus papers. These were pre e-bay days and the only source I could find were photographic suppliers -very expensive! Medical suppliers would not sell to individuals so we had to rely on the NHS. Supplies were getting drastically low, so as I knew that our surgery were supposed to be sorting this out I called in and asked the girl on the desk if there was any news. She told me that there was to be a meeting between surgery and 'community' to decide which budget the litmus papers would be funded from.

I was FURIOUS!!!!!!!!!!!!

The flippin meeting would cost more than the litmus papers!

I pointed this obvious fact out to the girl on the desk and she agreed with me. I then demanded to know who I should complain to about this idiotic farce - she duly wrote down the details of who to complain to.

When I got home about an hour later I found that somebody had pushed a box of litmus papers through the letterbox - shame on me - I had deprived them of a nice meeting with coffee and biccies!

Eventually Bernie left and supplies became intermittent again.

David Baum was aware that there was a system for supplies to patients who used pump feeds (mostly I think for PEG feeding) but nothing for patients who used NG systems. He asked if he could use the problems we were having to get this rectified and have a system put in place for NG supplies.

I thought this was a good idea - there seemed to be no real system in place at all for NG supplies. Some patients were lucky and would be given bags and bags full of supplies by the ward whilst others had to struggle with few supplies. There was even an instance where another patient had begun using a new type of NG tube - a nurse was ecstatic and announced to me that it was wonderful that this patient had this new type of tube as it was much more comfortable -then she added - but Hari can't have them - they're far too expensive for her!

There was definitely a need for a system!

The system eventually took us on and we got regular supplies - well until we upset them in some unintentional way and then they would withhold supplies!

On one occasion I had to phone them up about something and whilst on the phone enquired what the system would be if we needed to change to a larger tube - I wondered was it a lengthy system and would we need to set things in motion allowing plenty of time for organisation -reasonable enough queries. That was it - they stopped supplying the tubes! When I complained about this, the then Chief Exec of the trust told me that we had to collect a tube from A&E each week - A&E found this somewhat confusing - and sometimes annoying. Some nurses were clearly annoyed - others would sneak me some extra tubes so that we had spares if needed. Eventually I was summonsed to see the A&E consultant who told me that she didn't want to waste her budget on 'some child she had never heard of' - I told her about my lack of concern for her budget!!!!

Eventually the supplies recommenced - apparently a nurse assessed Hari to select the right tube - this never happened but I suppose it looks good in the notes! What actually happened was a nurse and I had a conversation on the stairs of the hospital - she showed me a couple of different tubes (although she was far too busy to deal with it) and I told her which one we'd have!

Lately they've been at it again - for the last few months they have deliberately withheld supplies of the large enteral syringes. But we're too clever for them - if they think we have had no syringes they should remember that old saying - it's not what you know it's who you know - we have had plenty of syringes from another source and it hasn't cost us a penny! So if they thought that they could starve Hari into the emergency admission they have always wanted they were very very wrong!

Remember those posts where I told you to pity the dietitians? Forget it - they don't deserve any pity - they're as bad as the rest of them!

And if the dietitians think it is acceptable to turn up at people's homes without an appointment, try to gain access to the rear of the property through the car port gates (that wouldn't work as those gates are always locked against intrusion from undesirable elements!) and to bang on the windows of people's homes (clambering over the garden in order to do so), then you have to wonder where they learnt what is and isn't acceptable behaviour!

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