"Late cancer diagnosis and treatment"

About: Luton & Dunstable Hospital / Accident and emergency Luton & Dunstable Hospital / Gynaecology

(as a parent/guardian),

My daughter (in her mid 20s) sought help from our family doctor about severe pain in her back, abdomen and pelvis which she had had for at least three months. She was referred to a physiotherapist for an assessment.

Two months later and after frequent visits to the A&E unit, Urgent Care and GP she has been diagnosed with cervical cancer. During this time she was diagnosed with possible kidney stones and Polycyctic Ovarian Syndrome. She continued to be in acute pain throughout this period which she described as being in the centre of her pelvis and groin. She was frequently clammy and sweating and had very high blood pressure. The clinicians said they were mystified by her symptoms and started to suggest that she was anxious or suffering from work place stress.

Despite telling the hospital registrar in the women's health unit that she had never had a cervical smear test, no concern was expressed by the staff about this. She was several times told that the cause of pain is often never found, and that it often goes away as quickly as it appeared. She was told that a laporoscopy would be arranged to investigate further, but then this did not proceed as the consultant gynaecologist felt it was unnecessary as had been diagnosed from the ultrasound scan.

Although admitted on several occasions she was discharged with no diagnosis of the cause of pain. On discharge she was given a limited supplies of painkillers (e. g. just 100ml bottle of oromorph - barely enough for one day) over both of the bank holiday weekends in April).

When A&E staff advised that she needed to put pressure on the consultant to investigate more thoroughly and more urgently I sought advice from the hospital management for a second time. This led to her care being compromised in A&E when she was admitted by ambulance later that day. Having been given an injection for pain, she and I were ejected from A&E and told to wait in a very crowded waiting room, despite her being doubled up in pain.

The general manager attended and listened to my pleas (I said I felt like calling an ambulance) but did nothing other than confirm that he had arranged for my daughter to be seen by a consultant gynaecologist.

The paramedic told my daughter that she was being unnecessarily anxious about her pain and told her she did not have cancer.

The following day she saw the gynaecologist and was admitted for a pain management review and further scans. The consultant specialised in ovarian cancer but quickly reassured us that my daughter did not have cancer. I asked for an MRI scan but was told that this was not necessary.

To be fair, the gynaecologist was concerned about the pain and revised the decision not to do a laporoscopy, and this was planned for a week later. When anaesthetised the gynaecologist did a further pelvic examination and was able to see and feel what she thought may be a tumour. A biopsy was performed and my daughter was sent back to the ward. The gynaecologist told us she strongly suspected that it was cervical cancer. An MRI scan was arranged a week later.

We had to wait a further ten days to get a formal diagnosis.

Five days later we met the consultant oncologist from Mount Vernon who explained the treatment plan - chemo radiation and brachytherapy. My daughter was told that the treatment meant that she would not be able to have children and would have an early menopause so need to take HRT for the rest of her life.

Treatment will start later in June - nearly four months since she went to see the GP and almost two months after the consultant found what she described as a suspicious lesion, which she thought would be cervical cancer.

I understand that the type of cancer found is rare and difficult to diagnose. I appreciate that my daughter had not attended screening - but very few 25 year olds do, because they don't understand the importance of the smear test, don't realise that the HPV virus is as deadly as HIV/AIDs for women - and are embarrassed and fearful of the procedure etc...

But what I cannot understand is why the GP, hospital and urgent care could not recognise that despite not having the usual symptoms for cervical cancer, she did tick every box for being at high risk. I didn't know that either - but then I am only a mum and not a trained clinician. I may only have O level Biology but it seems pretty self evident to me that pain = a problem. Pain relief only camouflages the pain, it doesn't cure the cause of the pain.

And defending the decision to give pain killing injection and discharge a young women who was very distressed into a public waiting room is crass.

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Response from Peter Howard, Head of PALS, Complaints and FOI , Communications and Engagement Directorate, Bedfordshire Clinical Commissioning Group (BCCG)

Dear 'trustyourinstinct',

I was very sorry indeed to read all that you have to say about your daughter's recent experiences across the whole health spectrum, from GP, through A&E unit, Urgent Care, Ambulance Service and the Luton & Dunstable Hospital. There appear to have been real issues over diagnosis, treatment, delays and risk awareness which should be subjected to closer scrutiny. I think that the best way of doing this would be for your daughter (or you with her consent) to make a complaint. There are protocols in place to ensure that you only have to deal with one service provider and that they should collate a joint response for you to all the issues, from the various service providers involved in your daughter's treatment.

May I ask you please to contact me directly, by email or by telephone, to discuss this further?

Peter A Howard

Head of PALS, Complaints and FOI

Bedfordshire Clinical Commissioning Group

Telephone: 01525 864430 X 5946

Email: peter.howard@bedfordshireccg.nhs.uk

Mobile: 07813 068821

Safe haven fax: 01525 864425

Secure email: peterhoward1@nhs.net

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Response from Luton & Dunstable Hospital

We are extremely concerned that your daughters experience was such an unpleasant one. Please be assured that we do investigate matters as much as we can from the information we receive. The incident occurred sometime ago, If you have not already contacted the L&D directly regarding this matter and you would like us to address any of your concerns further then we would encourage you to contact our Patient Affairs Office directly on 01582 497 002, or email complaints.officer@ldh.nhs.uk.

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