Inquiry Results

Below is a copy of a letter sent from Darren Grayson, Chief Executive of Brighton and Hove Primary Care Trust, to Tara's family on 13 January 2010.

"Dear Mr Huckle

Complaint regarding your daughter's diagnosis

I have now received responses from Brighton and Sussex University Hospital Trust, who treated Tara at the Susex Eye Hospital and the Royal Alexandra Children's Hospital, and also South east Health Ltd, who run the Urgent Care Centre within the Accident and Emergency Department at the Royal Sussex County Hospital.

Care at Brighton and Sussex University Hospitals Trust

The letter from Duncan Selbie, Chief Executive, confirms that a Choose and Book appointment at the Sussex Eye Hospital was requested on 25th June 2009 by Tara's GP. On 2nd July an appointment was booked for her to be seen on 27th July. This appointment was subsequently cancelled on 7th July because yourslef/your partner requested a change of date. A further date of 4th August was booked.

The referral letter from the GP did not indicate any need to expedite the appointment; it stated that Tara would appear to have a "left-sided, non paralytic concomitant squint" but that otherwise she was "fit and well". there was no reference to her having any problem with mobility or not being able to walk.

On 2nd August, Tara was brought to the hospital by her mother, and was seen in the Urgent Care Centre in the Accident and Emergency department. She was noted to be recovering from Chickenpox, to have a mildly convergent squint, and poor mobility. she was otherwise alert and referred back to the care of her GP. We have obtained comments from South East Health Ltd regarding Tara's care - please see later in this letter.

Tara subsequently attended the Sussex Eye Hospital for her booked appointment on 4th August, where she was seen by an Orthoptist (an Orthoptist is an allied health professional who diagnoses and treats eye alignment and eye movement disorders, also assesses squints, double vision and other abnormalities of binocular vision). Joy White, Head of Orthoptic Services at the Susex Eye Hosiptal, has explained that Tara's reviewwas to establish if she was long sighted. The most common cause of developing a convergent squint, in the absence of limitation of abduction of either eye, is long sightedness. The Orthoptist who saw Tara would not have commented on any other cause for the squint until long sightedness had been ruled out. Following the assessment by the Orthoptist, Tara was referred to see the Optometrist (eye specialist doctor) the following day.

Following review by the Optometrist, Tara was seen immediately by Miss Sarah Vickers, Consultant Ophthalmologist, who arranged for her immediate admission to the Royal Alexandra Children's Hospital for further investigation.

Dr Tony Bonavia was the consultant paediatrician on take for the week of Tara's admission. Her condition was presented at the handover meeting on the morning of 6th August. From the information provided, it was clear that Tara needed urgent attention and Dr Bonovia saw her immediately after the handover meeting. Arrangements were made for Tara to have an MRI scan of her brain, which confirmed the presence of a brain tumour with Hydrocephalus, giving rise to significantly raised intracranial pressure. Tara was immediately transferred to the Regional Paediatric Neurosurgical Unit at Kings College Hospital as she required urgent surgery.

Tara's post operative care and management was carried out by the paediatric neurosurgical team at Kings College Hospital.

The hospital trust have said that in summary, after a review of Tara's records, it is apparent that once she was seen at the Sussex Eye Hospital, her care was timely and appropriate.

Duncan Selbie, the Chief Executive of Brighton and Sussex University Hospitals Trust has asked that his best wishes be conveyed to you for Tara's continuing recovery.

Care at the Urgent Care Centre

The response from John Vezey, Clinical governance Manager from South East Health Ltd, confirms that Tara was seen by Dr Grimm, a Brighton and Hove GP who also works in the Urgent Care Centre. Dr Grimm is sorry to hear of the difficult time Tara, and your family, have had to go through, and is pleased to hear that Tara is continuing to make progress.

Dr Grimm has confirmed that he saw Tara on the afternoon of 2nd August at the Urgent Care Centre. Tara's presenting complaint was that she had been suffering with Chickenpox and had not been walking recently.  A balance problem was questioned, and Dr Grimm recalls being made aware that Tara had been seen by her regular GP and had an imminent appointment at the Ophthalmology department.

Clinically, Tara presented to Dr Grimm alert and without a fever. She was not irritable and showed the residual eruption of a Chickenpox rash. Dr Grimm noted that Tara had a mild convergent squint. Her ear, nose and throat examinations were normal, as were her hip and skin fold symmetry.

Dr Grimm discharged Tara and suggested a routine follow up with her regular GP, which is Dr Grimm's normal practice as an out of hour GP; he was, as stated, also aware that a secondary care appointment was imminent. 

Dr Grimm is aware that there has been a significant event analysis about the care Tara received in Primary Care, led by the in-house GP practice. The outcomes and learning points from this review have been shared with Dr Grimm.

Complaints about care at the GP practice

We are aware that your complaint was made directly to the GP practice concerned, and that you have received the response.

PCT Review

the responses to your complaint have been reviewed by the PCT's Medical Advisor; some concerns were expressed about the repeated presentation to the in-hours GP practice. However, the Medical Advisor is satisfied that the response, review and learning outcomes identified by the practice are appropriate, and that these have also been shared with Dr Grimm, as the out of hours GP who saw Tara. It was felt that care by the hospital was appropriate.

In additin to the learning points identified by the GP practice, the PCT's training team are looking (at the request of the practice) into training for GP's in the recognition of some of the less usual neurological signs and symptoms, such as those presented in Tara's case.

Summary

I hope that you are satisfied that all the issues in your complaint have been addressed. Please do contact our Complaints Manager, Jane Bolding, should you wish to discuss the issues further, or meet with any of the health professionals involved in responding to the issues.

If you remain unhappy with the outcome of your complaint you can ask the Parliamentary and Health Service Ombudsman to review your case. I have enclosed a leaflet about this for your information. 

Thank-you for bringing these issues to our attention; we do value complaints and feedback as a way of continually improving our services; we also hope that Tara continues to make good progress.

I have enclosed the letter sent from the Trust's Chief Executive, Duncan Selbie, to me, in response to requesting their comments on Tara's care. As you will see, the review of the records have led to a conclusion that Tara's care in the Sussex Eye Hospital was timely and appropriate.

As is pointed out in the letter, although you took Tara to the Accident and Emergency department, she was actually seen within the Urgent Care Centre - this is run through South East Health Ltd, rather than Brighton and Sussex university Hospital Trust. As soon as we became aware that this was the case (i.e when the Hospital Trust informed us that Tara was not seen in the Accident and Emergency Department), I contacted South East Health Ltd for their feedback on Tara's care.

I am still waiting for this response, and will pursue this immediately. But in order not to delay matters further I thought it would be useful for you to see the response from the Hospital Trust.

When I do receive the response from South East health, it will complete all of the investigation in to Tara's care, and I will contact you again with this additional information in order to complete the whole picture.

If, at this point or when we receive the final part of the response, you wish to discuss the issues, or need further clarification, please do not hesitate to contact me.

I hope that Tara continues to make good progress.

Yours Sincerely,

Darren Grayson

Chief Executive"

On 18th February 2010 Tara's dad responded thus:

"Dear Darren,

We've just had some feedback from Tara's first scan since the summer's traumatic events - there's been no more growth of the small amount of tumour left in Tara, which is great news - if it stays that way she will not need further surgery. And she continues to prosper - you can see for yourself if you have some moments: http://www.tarastale.org/taras-image-gallery.

Thank-you for your letter detailing the responses from the many parties involved in Tara's case. I wanted to see the final letter from South East Health Ltd before coming back to you, but since it's not been forthcoming, I thought it was about time I wrote. I also note that your letter makes mention of a letter from David Selbie, and yet no such letter was enclosed with your correspondence?

Anyway; in general I am satisfied with what I have read. I am pleased that the GP practice and Mr Grimm are looking at learning outcomes from the review, and that they are seeking training for recognition of some of the less usual neurological signs and symptoms.

I am a little concerned that there was no mention of these learning outcomes being shared with the Orthoptist who saw Tara on 4th August. My original complaint was that Tara's neurological signs were obviously symptomatic of a brain disorder (according to Kings), and that someone should have acted upon them sooner. To my mind, that includes the Orthoptist who made the mistaken diagnosis that Tara was simply long-sighted. Furthermore, it showed little sensitivity to what the family have been through to have been reassigned to that very same Orthoptist post surgery - although I managed to keep my dismay in check when Tara and I first saw her, I found that meeting extremely difficult, and I feel I should not have been put in that situation.

I am also concerned that the first GP who saw Tara did not mention that Tara's mobility had suffered - we first took her to the practice because of the squint AND her walking having regressed. Surely all the facts should be recorded?

I would though like to reiterate our gratitude to everyone involved in Tara's care once she was diagnosed by Miss Vickers. It has been fantastic, and one of the positives to come out of this whole experience has been to witness the love and dedication that many health professionals put into their work. It has touched all the family deeply.

Best regards,

Steve Huckle"