"Bad experience in A&E where nobody will listen"

I have been in a wheelchair for the best part of 10 yrs due to several debilitating medical problems, needing a lot of help with daily care, I also have seizures on a daily basis needing medication to stop them, which my family can administer.

Occasionally, we need extra help if I’ve had an accident, e.g. if I fall when transferring from toilet to wheelchair or if I have a seizure and I’ve come out of the wheelchair and I land on my stomach and can’t move. When this happens and the seizure is short it usually means a 999 call and then a trip to A&E. This could be once a month or recently 3 times in 2 months.

I'm on very strong pain killers, mainly opiates, to which my body has become very tolerant and the only treatment which has worked up until now was administered by a Doctor in the A&E department several years ago. This involved a large dose of medication (opiates). Since that time whenever I end up in A&E (this Doctor is no longer in the department) and my husband tries to explain to the duty Doctor or consultant what has been done in the past, he is told that this cannot be done as its a dangerous dose – which causes us frustration and upset.

The only way forward seemed to be a care plan, as every time I’m in A&E staff don’t understand my needs. This usually ends up with my husband in tears, and my sons very distressed. So much so, that my oldest who hasn’t had an asthma attack for many years had an asthma attack on our last visit and had to be treated and put on a nebuliser. We cope every day, but sometimes need extra help if I’ve had an accident, usually in the form of stronger pain relief.

I asked the clinical director to meet with us; he was unable to attend the meeting and sent an A&E consultant – however, in a previous conversation a year ago he had refused to have anything to do with me. He said because I present myself (by ambulance) at the same sort of time, every time I go to A&E this forms a pattern, and as my husband tries to explain what was given previously, I have been accused of requesting medication.

Anybody who suffers with seizures will know they tend to have a pattern, they may happen in mornings afternoons evenings or during the night but there is some pattern to them, due to this pattern the A&E at Kettering General Hospital have now said I present like a drug user (there’s a pattern, I request strong opiates and it’s a similar time of day all the time, late afternoon early evening) they will now only give paracetamol and diclofenic rectally and oramorph.

What they are missing is the fact I’m on stronger meds at home and also the fact my husband needs some support, he doesn’t want to see me going through this, he has enough to deal with every day.

In the past at Kettering General he has been helpless to try and move me with no help from staff, whilst I have lay in urine for approx 3 hours. Well after the meeting things made a little more sense. The KGH clinical director and this consultant (who has never treated me) think I go through, and put my family through all this, because I need a fix – forgetting I have all my normal medication at home and if I needed a fix I could take a little more.

I feel like a burden every single day to my husband and sons and they never complain and they help me with every single part of day to day living, it’s just a shame the A&E staff at Kettering General can’t see this and understand or at the least show some compassion.

If we had never put that complaint in, I honestly feel things would be different, so where do we go from here? The next time I end up in A&E, they will probably have to admit me and this is no help for me my family the person who needs a bed and the NHS. I just wish they could see what some people go through on a day to day basis instead of "oh there’s a pattern here" "she has come for another fix" when they are so wrong.