"Frighteningly poor neurological care"

About: Wye Valley NHS Trust

My husband, who has complex neurological problems, was admitted in June 2015 after suddenly developing seizures and what we now know was cerebrogenic asystole (his heart stopped in the ambulance - he was resuscitated by an excellent paramedic).

He had a CT scan but a EEG was arranged and then cancelled .

A visiting neurologist refused to see him (citing "issues" relating to a complaint about him made by my husband 5 years ago and upheld at the time).

Another a visiting neurologist, saw my husband for less than 5 minutes immediately before he was discharged to community care because his seizures had by then been brought under control by medication on the advice of the London neurology hospital where my husband is a patient.

They did not examine him and dismissed his symptoms as "dissociative" and "non-neurological", despite 22 references in his records to "tonic clonic seizures", "grand mal" seizures, "focal seizures" etc. etc. made by medical, nursing and ambulance staff.

They also cancelled the planned EEG (despite this being a NICE recommendation for new-onset seizures, and despite the numerous references to seizures in his notes).

An MRI was refused (also a NICE recommendation).

They stated that "no neurology" was required.

We were so concerned that we subsequently arranged a private appointment with an epilepsy specialist at the London specialist neurological hospital who treat my husband for other problems.

We also paid privately for an MRI scan, which sadly has revealed a brain lesion (which is under ongoing investigation) which has "definitely progressed" since an previous MRI scan in 2012.

The London specialist also believes this to be the likely cause of the seizures and continues to treat my husband (now via the NHS).

He has since received 5 weeks of inpatient care and investigations in specialist wards.

We have complained to the Trust who, after lengthy delays, have sent the most evasive and inadequate responses, which simply do not address our concerns!

Some of the medical care (from non-neurologists) and nursing care was excellent but sadly the hospital's visiting neurologists prevented a potentially serious condition from being properly investigated.

In fairness, my husband receives excellent outpatient care for respiratory complications of his condition and was very well cared for during an earlier admission in March 2015 for severe urine and chest infections.

On both occasions, he received superb rehabilitation care from Ross Community Hospital.

The Trust does not have its own neurology service and this is the second time that a "visiting" neurologist has failed my husband.

I thought long and hard about submitting this review but feel that others in the area with neurological conditions that may result in hospital admission should be aware.

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Responses

Response from Wye Valley NHS Trust

On behalf of Wye Valley NHS Trust I wish to thank you for taking the time to provide us with your feedback.

I will be passing on your valuable comments to the relevant departments.

I shall also pass on your compliments regarding the excellent care recieved in respiratory medicine and Ross Community Hospital.

If you would like to contact the PALS Department to discuss your feedback please do so on 01432 372986.

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