"I found my husband's stay in hospital to..."

What I liked

I found my husband's stay in hospital to be a very distressing and depressing experience so not much to say about what I liked.

I am unable to recommend a hospital where the staff believe that it is not in a patient’s best interests to be given artificial nutrition because they have a Progressive Neurological Condition. There will be cases where it is not in a patient’s best interests to be given artificial nutrition but not all therefore each case needs to be looked on an individual basis.

Although most members of staff showed me respect they did not at any time appear to appreciate my distress or share any of my unease at my husband’s treatment (or lack of it)

Most showed a complete lack of understanding of my justifiable anxiety.

My questions and concerns were seen as unnecessary and at times I was made to feel like an interfering busybody.

I believe that it is only thanks to my personal interventions regarding my husband's treatment that he was eventually able to come home on Thursday 16th September.

He actually arrived home at 11.45 in the evening following a thirteen hour wait for an ambulance.

I was told that this unacceptable delay was not the fault of Stepping Hill Hospital but the fault of the Ambulance Service.

It would seem such a delay is considered normal by both Stepping Hill Hospital and the Ambulance Service.

I was told some in-patients have waited three days for an ambulance.

Background to hospital stay

My husband was diagnosed with Multiple Sclerosis in 1994.

He has been virtually quadriplegic for the last thirteen years.

He needs help with all aspects of living including feeding, personal care and toileting.

He was admitted to Stepping Hill Hospital on Thursday 2nd September with aspiration pneumonia.

He was admitted from a Nursing Home where he had gone for respite while I had a break.

He is normally cared for at home by me with the help of paid carers.

What could be improved

He could have been offered a temporary naso gastric feeding tube.

Hospital Experience

While being fed lunch on Tuesday 7th September my husband experienced swallowing difficulties.

From what I can gather this amounted to a few coughs and some spluttering while eating his lunch.

This has been normal for him for the last ten years but not considered normal in hospital.

The hospital thought it more normal to make him "nil by mouth" for days on end as "a precaution"

He therefore had no nutrition or any of his regular medications for six days.

Unsurprisingly he reacted very badly to having his all medication withdrawn so abruptly.

Forty eight hours after being made by "nil by mouth" he had a major tonic–clonic seizures seizure that lasted in excess of 35 minutes which is an incredibly long time for a seizure.

He required a huge amount of medical intervention to bring him out of the seizure.

He then continued to have frequent myoclonic seizures for the next four days as his regular medications were still not resumed as they could not be given intravenously.

No alternative medication was prescribed for him apart from Sodium Valproate.

To make matters worse I was told by my husband's consultant following his seizure that my husband would not be offered any form of Artificial Nutrition or Dehydration (naso gastric or PEG) as he has a Progressive Neurological Condition and it was not in his best interests!

Better to let him to die from lack of nutrition than provide Artificial Nutrition or Dehydration either naso gastric or Percutaneous Endoscopic Gastrostomy. Apparently he was implementing new guidelines issued in January of this year by the Royal College of Physicians.

Anything else?

Other issues / complaints / observations / recommendations

Too much case note writing but not sufficient case note reading

Lack of regular and appropriate bowel care

Lack of concern as to whether my husband has had his bowels opened in the last week.

Fluid chart not made available to me.

Delay in moving from acute ward to regular ward

Poor and inappropriate manual handling

Delay in SALT assessment

Delay in Physiotherapy assessment

Lack of mobilisation of limbs

Delay in pressure relieving mattress being provided

Delay in electric profiling bed being provided

Delay in cot sides being provided

Lack of regular daily personal care eg shaving, teeth cleaning,

Poor attitude of certain staff to my concerns about their manual handling

Inconsistent levels of care due to frequent staff changes

Poor communication between staff

Too many staff saying “Sorry, I’ve only just met your husband today - I’m not familiar with his notes”

Recommendation that staff be informed that there is more than one type of Cavilon Cream and they have different applications.

Footnote

I have since bought a copy of the Royal College of Physicians guidelines as they have huge implicatons for a lot of people including my husband.

I was fascinated to read the following: -

"No authority lends the slightest countenance to the suggestion that the duty on the doctors to take reasonable steps to keep the patient alive in such circumstances may not persist. Indeed, it seems to us that for a doctor deliberately to interrupt life-prolonging treatment in the face of a competent patient’s expressed wish to be kept alive, with the intention of thereby terminating the patient’s life, would leave the doctor with no answer to a charge of murder."

Extract from the publication: -

Oral feeding difficulties and dilemmas

A guide to practical care, particularly towards the end of life

Report of a Working Party January 2010

Section 4 Law

Paragraph 4.22

Page 53