Why The Hip Failed To Provide The Required Emergency.

For some years now Hari's hip pain has been controlled by steroid injections. These generally last for about six months and are repeated, under anaesthetic at the Children's Hospital, when necessary.

We have been aware, for some time, that the pain associated with urinary problems, interferes with the length of time that the hip injections succeed for.

When Hari experiences pain from the urinary problems; pain that has not been controlled effectively due to lack of diagnosis and contra-indications with some painkillers, she naturally tries to make herself more comfortable in order to alleviate this pain. Unfortunately this results in her sitting position becoming unsuitable for her hip and the hip pain then returns earlier than expected - often moving rapidly from no hip pain to severe hip pain in a very short stretch of time.

During 2007 the times between injections being needed were reduced and interestingly, this coincided with the recommended use of a pre-prepared nutritional feed which had a higher level of sodium than the one which had previously been used.

Since stopping the use of pre-prepared nutritional feeds and paying close attention to Hari's sodium and potassium intake, in order to deal with the urinary problems and associated pain, we have realised an unexpected advantage.

The Hip pain has failed to return!

Obviously, as Hari has been free from the pain associated with the urinary problems, her self positioning has altered and this has been beneficial to the hip problem. Hari's hip was last injected in August 2007 and she has now gone over fourteen months with no hip pain whatsoever.

So - the emergency admission that Judith Armstrong, Modern Matron, had been relying on, simply failed to materialise.

What a shame!

Waiting Patiently!

Having referred the complaint back to the Healthcare Commission, we prepared to wait patiently for the processes involved to occur.

First we received the standard acknowledgement, which stated that we could expect to hear from the allotted case manager within 15 days. This acknowledgement was sent to us on July 28th 2008.

We waited patiently.

Eventually we heard from the allotted case manager, Ian Howe, and he told me that he would contact the health trust to ask for Hari's notes and the complaint file.

We waited patiently again.

Whilst we were waiting, some strange events occurred.

On August 28th 2008, Ian Howe wrote to me regarding the request for Hari's notes and the complaint file. The Information Access Team at the Healthcare Commission had decreed that, as Hari could not physically pick up a pen and sign her name, he must obtain her verbal agreement over the phone.

I telephoned Ian Howe and explained that Hari does not talk but offered him the opportunity to come and meet her, so that he could ascertain her response face to face. He didn't think that the Healthcare Commission would fund his travel costs! We discussed the fact that not requesting the notes would contravene the Disability Discrimination Act, as Hari's disability should not prevent her from having her complaint heard. Ian decided that he would go ahead and request the notes and complaint file.

So - a whole month after receipt of our complaint had been acknowledged by the Healthcare Commission, the letter requesting the notes and complaint file was only just about to be sent to the trust.

How fortunate that we were waiting patently - despite Hari's need for diagnosis!

The Mystery Of The Secret Appointment!

Another strange event began to unfold.

Whilst we were still waiting patiently I had also been dealing with some problems relating to Hari's feeding tubes.

Somebody, somewhere, had pushed some paper around a desk and decreed that everyone using NG tubes of the type we were using should change to a different type. We tried a few different makes before finding one that seemed suitable and throughout this process I had a few telephone conversations with Geraint - a dietician involved in ordering the tubes.

During one of these conversations Geraint commented that we had missed a hospital appointment and I assured him that Hari had no hospital appointments. However, he was adamant that we had missed an appointment and rifled through Hari's notes to locate a letter referring to this. He then told us that Hari had not attended an appointment on August 13th 2008.

This was the first that we had heard of this appointment!

Curiouser and Curiouser!

No letter had been sent to our GP surgery regarding the missed appointment - sending such a letter is standard practice.

Curiouser and Curiouser!

No replacement appointment, or letter telling us to seek a new referral, had been sent to us.

Curiouser and Curiouser!

Now then - John Reid, GP, had made the referral to Social Services/Adult Protection, alleging that Hari was not attending appointments, on June 24th 2008. At this point she definitely had no appointments.

The appointment that we were supposed to have missed was on August 13th 2008, nearly two months AFTER the Social Services/Adult Protection referral had been made!

Curiouser and Curiouser!

Is John Reid, GP, psychic - do you think?

Interestingly, the secret appointment was also AFTER I had pointed out to the Healthcare Commission that the referral had been made on the grounds of not attending appointments when no appointments had been given - and that this situation was not of our making!

Curiouser and Curiouser!

It seems to me that as certain people actually had no justifiable reason to instigate a Safeguarding Meeting/Adult Protection Review, they had found it necessary to invent a reason that might seem plausible enough to support their malicious actions.

Easy solution - book an appointment but don't tell the patient or carer about it.

HEY PRESTO! Vulnerable adult not attending appointments!

Not so curious now!

More about not telling the patient and carer about things later!

Another Delay In The Whole Process.

There we were waiting patiently, for the notes and complaint file to be sent to the Healthcare Commission, when we came home one day to find a strange message on the answerphone.

The Assistant Chief Nurse at the adult hospital, Sue Jones, happily announced that she remembered us from when she had worked at the Children's Hospital. (We have no idea who she is!) She claimed that they had always been pleased to see us coming in because of my sense of humour.

Now that is extremely strange!

Any of my friends will tell you that my sense of humour is seriously warped - many of them can give testament to the fact that they have been on the receiving end of some very strange practical jokes!

The message continued. According to Sue Jones the Healthcare Commission had asked for another attempt at local resolution.

Now excuse me - but hadn't we been there before?

Hadn't it failed?

Hadn't the previous attempt at local resolution wasted enough time and caused a protracted delay?

I telephoned Ian Howe, reached his voicemail and left a message.

Ian called me back and his explanation was that he hadn't asked for further local resolution. His explanation was that UBHT/University Hospital Bristol NHS Foundation Trust had misunderstood his request for the notes and complaint file. We did discuss the possibility of further local resolution but concluded that the independent review by the Healthcare Commission should go ahead.

I left the matter with Ian and so did not return Sue Jones's call.

A few days later Sue Jones left another message on the answerphone, in which she stated that she would write to me.

Sue Jones's letter was written on October 9th 2008, still claiming that the plan was for local resolution.

Her proposals were twofold.

Firstly, she suggested another meeting that would include Anne Berry.

Now we very definitely had been here before - and it had failed!

In fact, we had been so unimpressed with, and offended by, Anne Berry's attitude and actions that we would not contemplate meeting her again.

Secondly, Sue Jones suggested that Hari should have an appointment with Stafford Lightman, endocrine consultant at the adult hospital, in order to get his opinion on the undiagnosed problem. She stressed that such an appointment would not mean a transfer of care.

Hari and I were both concerned with a further aspect of the letter. Sue Jones stated that she had '...corporate responsibility for patients with learning disabilities.' and the proposed meeting was to include a '...Learning Disabilities Specialist Nurse.'

Hari does NOT have learning disabilities!

But there they were, pigeonholing Hari into a learning disability category, simply because she has a physical disability which results in her using a wheelchair. This type of discrimination is unacceptable from what is supposed to be a professional organisation. With this attitude there is little hope that they will be able to consider the issues appropriately or adequately.

Ian Howe had outlined to me, the agenda for the proposed meeting. The focus, yet again, was to be transfer of care. There appeared to be no plan to discuss health care that was safe and appropriate for Hari.

We responded to Sue Jones's letter, explaining all our concerns and outlining two proposals, that we know are both reasonable and appropriate for Hari.

The two proposals that we put forward were that firstly, Hari should be seen as an outpatient at the Children's Hospital in order to facilitate diagnosis of the undiagnosed and secondly, that Hari's inpatient care should be returned to the Children's Hospital - with this being reconsidered when the young adult ward is opened. This response was copied to Ian Howe at the Healthcare Commission, reiterating our previous discussion that the independent review should go ahead if these proposals were refused.

This strange event had begun to unfold at a particularly inconvenient time for us. Sue Jones' letter had arrived just as the Cheltenham festival of literature was beginning.

The festival is our 'annual pilgrimage' - we spend ten days whizzing back and forth to Cheltenham, relaxing and enjoying the numerous events - and Hari also hits the shops! After all the hassle of the previous nine months we were desperately looking forward to this break.

So over the first weekend of the festival, when all the other festival goers were laid on the grass in the gardens, relaxing and soaking up the sun between events, we were sat amongst them composing the response to Sue Jones's letter.

On the Monday morning, when we should have been taking life easy, we found ourselves driving to Bristol to hand deliver the response as we felt it needed to arrive quickly and Sue Jones had not included her e-mail address.

We couldn't enjoy the festival as much as we should have done. The stress and worry of the whole situation prevented us from relaxing and enjoying any of the events as much as we usually would.

So much for our desperately needed break!

Our Proposals Are Rejected By The Health Trust.

On October 27th 2008 Sue Jones wrote to me again.

The letter stated: '...we are not likely to be able to progress local resolution of your complaint.'
So she was rejecting the reasonable and appropriate proposals that we had made. We cannot understand why. It is clearly obvious that our proposals are the safest and most appropriate plan for Hari's immediate health care needs.

However, we were not surprised by the content of the letter - Ian Howe had already told me that this rejection was the case.

Sue Jones suggested in her letter that: '...the best course of action is now to pursue the independent review.'
Well - we had already made that particular decision!

The original complaint was referred to the Healthcare Commission in April 2008 - and it had taken over six months to get to the point where the independent review would actually go ahead.

I had mentioned in the original complaint that the matter was urgent!

What also concerns us about the content of the letter is that Sue Jones stated that she had: '...addressed the concerns you have expressed with Anne Berry, Discharge Manager and Ian Hough [sic] from the Healthcare Commission.'

Now then - ignore Anne Berry's title of 'Discharge Manager' - she's a nurse.

Did Sue Jones not address our proposals with any real managers?
Did Sue Jones not address our proposals with Michele Narey or Geraldine Johnston?
Did Sue Jones not address our proposals with the Medical Director or the Chief Executive?

More on Sue Jones's letter later!

Secrets Revealed!

When we had re-submitted the complaint to the Healthcare Commission, after the first attempt at local resolution, we had requested that we were sent copies of communications between the Healthcare Commission and Anne Berry/other agencies.

We had made this request due to concerns regarding Anne Berry's claim that the Healthcare Commission had requested that we were referred to Social Services/Adult Protection.

The Healthcare Commission decided that this should be treated as a request under the Freedom of Information Act and sent it to their Information Access Department.

Initially the Information Access Department denied that there had been any correspondence between the Healthcare Commission and Anne Berry/other agencies '...in respect of your complaint concerning the trust.'

As a result of this denial we had to use the appeals procedure, stressing that we already knew that communication had occurred and reiterating that our request referred not to the complaint itself but to the Adult Protection issues.

On October 30th 2008, the Information Access Department at the Healthcare Commission sent us some copies of internal e-mails and a 'cause for concern sheet'. The e-mails had been copied to Anne Berry.

The e-mails confirm that there had been discussion with Anne Berry, regarding adult protection issues.

However, one e-mail states:

'...I have explained to Anne that you will probably be keen to separate the complaint from the trust's healthcare management, so as to maintain the Commission's impartiality in dealing with the complaint.' The e-mail goes on to suggest that the recipient should have a phone conversation with Anne Berry.

Two days later another e-mail states: '...we are not in a position to advise on what action the trust's safeguarding lead should take, as this is outside both our remit and expertise.'

So - could we safely assume that the Healthcare Commission was completely impartial and had not asked Anne Berry to make a referral to Social Services/Adult Protection?

There was no inclusion in the information of details of the phone calls that had taken place, although we had asked for this information.

That leaves the 'Cause For Concern Sheet'.

On May 1st 2008, prior to the internal e-mails which we had been sent copies of, a 'Cause For Concern Sheet' had been filled out by Clare Gasher, Complaints Case Manager.

Apparently taking her information from the documents available to her, Clare Gasher seems to have ignored the content of our complaint; giving regard only to the contents of Graham Rich's response to our original complaint to UBHT/University Hospitals Bristol NHS Foundation Trust.

Throughout the 'Cause For Concern Sheet' she refers repeatedly to all fault of the situation being mine. She falsely states, more than once, that I am the one refusing Hari medical care! She repeats false allegations from the trust regarding low calorie and sodium intake and the nutritional feeds, whilst making no mention of the problems and pain that these feeds cause. In fact NOWHERE in this sheet does Clare Gasher mention the need for diagnosis, that I have repeatedly requested but which has been repeatedly refused by the trust.

Again the inaccuracy that attributes learning disabilities to Hari is included.

I am informed that this form was completed following the occurrence of an enquiry from the Healthcare Commission to the trust, in order to ascertain whether or not a referral to Adult Services had been made.

Two serious points are immediately apparent.

Firstly, that Clare Gasher, a Complaints Case Manager at the Healthcare Commission, has seen fit to fill out a 'Cause For Concern Sheet' without accurately ascertaining the true facts of the matter and whilst ignoring Hari's need for diagnosis of the undiagnosed.

Secondly, that as early as May 2008, Clare Gasher, a Complaints Case Manager, had already reached her conclusions on all the issues involved. She had done this within two weeks of the complaint arriving at the Healthcare Commission, without any further investigation, without seeing Hari's notes, without seeing the complaint file held by the trust and without seeking independent medical advice.

So much for impartiality!!!

We are obviously concerned that the existence of this sheet and its contents, will prevent our complaint from being reviewed in a fair and independent manner. We are also concerned that decisions had been made as far back as May 2008 and that all subsequent events and procedures have been no more than a time wasting pretence.

We Ask Some Questions - But Get No Answers So Far.

The letter containing the 'cause for concern sheet' arrived on October 31st 2008.

We were horrified by the inaccuracies in this composition and realised that we had no reason whatsoever to trust the Healthcare Commission. This organisation is supposed to investigate problems within the NHS and recommend steps to be taken for resolution and improvement.

Their website states:'

We check the quality and safety of healthcare provided by the NHS and independent organisations, promoting improvements for patients.'

They are clearly not supposed to cause further problems!

I telephoned the main number for the Healthcare Commission and asked who I needed to speak to regarding the 'cause for concern sheet' as, at this point, we were seriously considering taking legal action.

I was put through to a manager, Loraine Darcy, who seemed unable to answer my questions but she promised to call me back the same day. She did not call me back. (Although she now claims that she did try to call me back but must have miss-dialled!)

On November 4th 2008, Ian Howe telephoned me saying that Loraine Darcy had told him that I had called wanting to know what was going on in relation to the independent review. I explained to him that this had not been the reason for my call and outlined our concerns regarding the 'cause for concern sheet'. Ian said that he would get Loraine Darcy to call me straight back.

Instead, it was Ian who called me back. He explained that Loraine Darcy was about to go into a meeting and asked if I would be home the next day for her to call me then.

Late morning on November 5th 2008, she finally called me. Firstly she demanded to know whether or not we had begun any legal action. I informed her that we had not done so -yet!

Obviously, the decision to take legal action is ours and can be made at any point. The fact that we have not yet decided to go ahead with this, does not prevent us from doing so at any point during or after the review process.

I put some questions to her and insisted that we should have the answers in writing. She confirmed that she would do this.

To date, November 16th 2008, we have not received her letter.We are still waiting - but not too patiently!