Side Effects!

Side effects are endemic in the NHS. They prescribe one medication to treat a problem and that medication risks causing further problems as its active ingredients act on other parts of the body too. Another medication is prescribed to deal with the side effects, that medication, in its turn, can cause further side effects, and so on!

Side effects are clearly not limited to medications. Everything that is done within the NHS risks adverse effects. Within this whole farce the adverse effects of their actions have been far reaching.

Obviously the main effect is that Hari has no access to safe and appropriate health care, beyond the limited scope of the GPs' and in all honesty they are not a great deal of use to her apart from repeat prescriptions.

Also, it is obvious that there is still no diagnosis for the undiagnosed. Their refusal to investigate and diagnose puts Hari at risk of harm, as without a diagnosis we cannot be sure that the beneficial dietary changes are sufficient. Her health is being deliberately neglected by UBHT/ University Hospitals Bristol NHS Foundation Trust - and this is not for the first time!

The stress and worry of all this has adverse effects on both of us in various ways. The people who are supposed to be supportive have actually caused many problems in our lives. In fact, Richard Harrison, Practice Manager at the GP surgery, on reading the contents of the letter from Anne Berry to the GP, announced angrily: " These people are supposed to support you not cause you all this hassle!"

Official bods seem to put a lot of emphasis on the benefits of respite care. However, we have never been interested in the conventional system of respite - we don't fit their box!

My own means of creating respite has been through study. I decided to add a BSc to my BA and prior to the eruption of this situation, had been thoroughly enjoying working towards this qualification with The Open University. Actually, I'd been doing rather well - having achieved a distinction for the previous year and was ecstatic at the content of this year's courses. I unpacked the experimental equipment when it arrived and was like the proverbial kid in a toy shop; itching to get on with conducting the experiments!

It didn't last long.

The problems caused by UBHT /University Hospitals Bristol NHS Foundation Trust, made it impossible to continue with the work involved. So that was that. My respite had been taken away by the people who are supposed to be supportive.

The further adverse effect of this was financial. The course fees still had to be paid and that money, money which I struggled to afford, was now wasted. Due to the circumstances the University decided to allow me a fee waiver of 50% which was obviously a help - but at a cost to the University. Unfortunately I would never be allowed another fee waiver in relation to Hari's health, so, in any further study, I would risk losing even more money if Hari were to become ill mid course.

Richard Harrison had said something else to me. He had said that the surgery were concerned that I '...should have a life too.' My response was to tell him that I'd had a ****ing life before all this **** had started!

However the adverse effects and risks to both Hari and I being able to have lives was greater than this. We have a list of all the items we would need to take with us if it became necessary to leave home and disappear in a hurry.

If anybody had tried to enforce any actions through Social Services /Adult Protection that would have resulted in Hari being forced to use the pre-prepared nutritional feeds, which cause her so much harm and pain, then we would have packed the essentials and left - leaving no forwarding address. We were prepared to give up everything in order to protect Hari from this NHS lunacy.

Strangers often approach us and ask about Hari. They usually include the comment; ' she must be such hard work.' I generally tell them that the really hard work is the idiots you are forced to deal with in officialdom and the NHS!

This current farce proves my point!

The results of Hari's new diet are hugely beneficial to her. It makes some people look exceedingly stupid! Would they see this benefit and still tell us that the symptoms and effects that I described to them are not possible? Good heavens! The symptoms and effects were witnessed in the hospital by a junior doctor and still they told us it was not possible!

They should be grateful that I have prevented them from causing further harm and pain to Hari. Had they managed to force Hari to continue to be fed these pre-prepared nutritional feeds, especially at the volumes which they had intended, then the harm and pain this would have caused Hari could have been catastrophic - and they would have looked even more stupid than they already do!

During Hari's inpatient admission, their insistence on feeding her these pre-prepared nutritional feeds and their refusal to allow Hari to be fed according to her needs contravened her human rights. It also contravened the Disability Discrimination Act and ignored the trust's Disability Equality Duty.

The adverse effects of their actions seem never ending - that is what happens in a system which allows employees to wield power, unacceptably, over the individual.