An open letter to the Health Secretary

In the woods.....

Sajid Javid MP,
Secretary of State for Health and Social Care,
House of Commons,
London,
SW1A OAA

 

30 June 2022

 

Dear Mr Javid,

 

I am writing to you concerning an issue which is adversely affecting my wife’s (and indirectly my) health.  In advance I apologise for the length of this, but I feel it necessary to present you with the full story, partly because we will not be alone in this.

 

My wife, Amanda, who is now 68 years old, was diagnosed with dementia over ten years ago. Initially the diagnosis was early onset Alzheimer’s disease, and she was prescribed Donepezil for a year.  I was not convinced by this diagnosis, however, and so, after extensive further testing, a brain scan, and the involvement of a neurologist, the diagnosis was corrected to Frontotemporal Dementia (Semantic Variant) a rare form of dementia which has an approximate life expectancy of twice that of Alzheimer’s, and for which there is no cure nor officially authorised medication.

 

For several years she has been seen by Professor Jonathan Schott, Professor of Neurology at the Dementia Research Centre, UCL Institute of Neurology and Honorary consultant neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square.  Professor Schott has maintained contact with me as Amanda’s husband and principal carer (with LPA) over the years, though Amanda is no longer capable of attending his clinic nor of understanding nor communicating as the disease has robbed her entirely of speech.

 

For the record we moved from Hertfordshire to Norfolk in January 2021, partly to give us more space to accommodate our daughters and other carers who may need to stay overnight.  Since the move Amanda’s condition has deteriorated (for example she is now entirely dependent on myself or carers for everything, from washing and dressing - she is doubly incontinent - to eating and drinking and going out for walks).  Since that move, we have had involvement from our new GP surgery, as well as Older Peoples Memory Assessment Team at Chatterton House, Adult Community Mental Health Service West and South Norfolk, who, in February 2021, recommended trialling Memantine Hydrochloride, which she now takes at 20mg a day, which may have helped keep her calmer as she was very disturbed by our move.  We have also had help from Adult Social Services, and have been visited by NHS Occupational Therapists who have provided some devices which help with Amanda’s security in the house.

 

However, and, after that preamble, this is the heart of the matter, Amanda has developed a tendency to get up and walk about at night, taking a risk in going downstairs as many as six times a night.  Generally, I am able to help her and to give her a drink of water and take her to the toilet, but on occasions she has fallen out of bed, or on the stairs, and quite often she gets stuck at the top of the stairs if I am not there.  Sleep disturbance is common among people with dementia and the impact for patients and their families is significant, and there are no easy solutions.

 

The effect of this is that she is not getting enough rest, but this is also having a negative effect on my ability to care for her.

 

In order to calm her and to help her settle at night, she was prescribed Risperidone (0.25 mg), an antipsychotic which is used to treat Schizophrenia, Mania, and aggression in people with Alzheimer’s dementia.  

 

As an additional attempt to get her to sleep better she was prescribed Melatonin (Mylan) 2 mg prolonged-release tablets. The active ingredient of these tablets is melatonin which belongs to a natural group of hormones produced by the body.  This hormone synchronizes the body’s biological day-and-night rhythm.  Although Amanda would still wake during the night (usually either because of incontinence or because of thirst) the effect of this prescription seemed entirely positive with no noticeable side effects.

 

However, when I requested a renewed prescription, this was denied, apparently because it should only be prescribed in hospitals(?) I questioned this but was told that there is some controlling body within the NHS, possibly within Norfolk, which will not allow the prescription of Melatonin by GP practices.  

 

The result of this was that the only viable alternative was deemed to be the Z drugs, such as Zolpidem and Zopiclone.  And so, we started to give her one or two Zopiclone 3.75 mg tablets at night.  This is a hypnotic or sleeping tablet.  What I did not know was that this drug should not be taken with antipsychotics such as Risperidone, one of the recognised side effects of which is signs of a stroke, such as a sudden weakness or numbness in the face, arms or legs, especially on one side.  Amanda did indeed appear to be affected in this way (though she cannot articulate her feelings) and one morning in May I had to call an ambulance as I feared she might have had a stroke.  After discussions with various medical professionals on that occasion we agreed to stop giving her Risperidone and she recovered from that incident. In the meantime, it seemed that after a few days of taking Zopiclone it may have accumulated in her body, and the recognised side-effects of reduced alertness, dizziness, confusion, loss of co-ordination, muscle weakness, restlessness, accompanied by several incidents in which she fell, all appeared to be present (though again there is no way of consulting Amanda about her feelings as she is incapable of communication).

 

We have stopped the Risperidone.  We have since stopped Zopiclone.  We are not allowed to have a prescription for Melatonin.  And apparently there are no other viable alternatives.

 

So, what I am writing to you about is to enquire as to why we cannot have Melatonin on the NHS?  It is available over the counter in the United States and Australia, and it is available online in this country.  Melatonin is a naturally occurring hormone produced by the pineal gland and is structurally related to serotonin. Physiologically, melatonin secretion increases soon after the onset of darkness, peaks at 2-4 am and diminishes during the second half of the night. Melatonin is associated with the control of circadian rhythms and entrainment to the light-dark cycle. It is also associated with a hypnotic effect and increased propensity for sleep.

 

However, I note that there has been a case in the Court of Appeal concerning the production of Melatonin, as a company called Neurim Pharmaceuticals is the registered proprietor of EP 1 441 702 (the Patent), which expires on 12 August 2022.  Could it possibly be that the NHS is caught up in the business affairs of Mylan and Neurim, and that as a result my wife and many others are being denied a relatively harmless pharmaceutical product?

 

I appreciate that even if Melatonin were to be prescribed for Amanda, it may not be suitable for long-term use, and I also know that it is not a magic bullet which will enable me to sleep undisturbed throughout every night.  But Amanda is dying and I am endeavouring to keep her in her home for as long as I can protect and care for her.  Strong sleeping pills known as ‘Z-drugs’ are linked with an increased risk of falls, fractures and stroke among people with dementia – according to research from the University of East Anglia, involving the University of Exeter.  Prof Chris Fox, from UEA’s Norwich Medical School, said: As many as 90 per cent of people with dementia suffer sleep disturbances and it has a big impact on their mental and physical health, as well as that of their carers.  To date there are no proven effective treatments available, however people with dementia are often prescribed Z-drugs (zopiclone, zaleplon, and zolpidem).  But a new study reveals that stronger doses of these drugs are linked with an increased risk of adverse effects.

 

And, as described above, Risperidone is not the answer either.

 

So, please could you look into this issue?  Perhaps with the expiry of Neurim’s patent in August other companies will be able to produce melatonin tablets at reduced costs and perhaps then GPs will be able to prescribe it, or perhaps even it will become available over the counter in Pharmacies?  It would be good to have a little light thrown on this and to feel that the miserable world of sufferers from dementia and their families and carers is not being ignored or made more difficult by business concerns.

 

Thank you for your attention, 

 

Yours sincerely,

 

 

 

Richard Gibbs

 

cc: James Wild MP, Professor Jonathan Schott, Heacham Group Practice, Chatterton House

 

 

Our House

Our house

Is a very, very, very fine house

Our House, 1905

This is our house. Welcome! It was built in 1883 by John Palmer Benstead (7th June 1828 - 24th February 1887). John was the illegitimate son of Elizabeth Benstead, who married Richard Folker, a farm labourer, in 1834. In the 1841 census John Benstead is recorded as a farm labourer, living alone in Heacham. He then worked for Thomas Savory at the Old Bakehouse in Ladies' Walk and married Mary Ann, his employer's daughter, in 1851. They had seven sons and four daughters, though one of these was stillborn.

Mary Ann, and John, had a bakery in the Market Square from 1851 until Alma House was built, at a cost of £900. In the 1860s and 70s the population of Snettisham was 1,233 and there were four other bakers in the village

Our House, today

When John died the business remained in the family. The photograph of the house in 1905 shows Frederick and Emma Benstead with their young son Bob. Apparently he took over the business from his brother Tony some time before 1930, and maintained it until his retirement in 1967/68.  He married Nellie in the 1920s and had a daughter, Mollie, in 1927 and a son, Alan, in 1930.  

Bob Benstead made bread, cakes and pastries, using a coal fired oven in what is now the kitchen.  

The kitchen as it is today - formerly the bakehouse - some of the ironwork is original.

Bob delivered to Snettisham and the neighbouring villages of Sedgeford, Fring, Ingoldisthorpe and Dersingham.  He had a cart and a donkey, which lived in this shed:

There was no inside kitchen in those days, nor a toilet or a bathroom - the outside earth toilet being beyond the donkey shed, with a large and a small wooden seat. The first bathroom was put in in around 1960.

This room, now a dining room, was the main living room:

And this, now my study, was the front parlour:

Many years ago, when Graham Nash was living in Laurel Canyon at Joni Mitchell's house, she brought home some flowers one day, and he composed a song, which he entitled Our House:

Our house

Is a very, very, very fine house (very, very fine house)

With two cats in the yard

Life used to be so hard

Now everything is easy

'Cause of you

And our

I'll light the fire

While you place the flowers

In the vase

That you bought today

I suspect it loses something in translation, and I should point out that we actually have three cats, but the sentiment (and it really is rather sentimental) fits our very fine house......

Of course we are nowhere near Laurel Canyon, but Snettisham is a fine village:

With, as you can just see in the top left of the board, pride in the Snettisham Hoard, or Snettisham Treasure, which consists of a series of discoveries of Iron Age precious metal, found in the area between 1948 and 1973. The hoard consists of metal, jet and over 150 gold/silver/copper alloy torc fragments, over 70 of which form complete torcs, dating from 70BC. Probably the most famous item from the hoard is the Great Torc from Snettisham, which is now held by the British Museum. Though the origins are unknown, it is of a high enough quality to have been royal treasure of the Iceni.....

The village has a fine church - St Mary's - which, according to Nikolaus Pevsner, is perhaps the most exciting Decorated (ie English Gothic from between 1290 and 1350) parish church in Norfolk, with its 175 ft tall spire (rebuilt in 1895) and its fabulous six-light window in the west front.....

The village also has a handsome 17th century Old Hall, built, like our house, of carstone (quarried just up the road) with brick dressings:

And, in a discreet way that puts most other villages to shame, there is a wonderful book shop, named after the Great Torc:

Perhaps inspired by this, and possibly as an indication that life is healthy here so we don't need a village defibrillator, the telephone kiosk now hosts a book swap:

And though there is no longer a Post Office (the post van visits four days a week), the main post box is a priority one, especially decorated by the WI for the Platinum Jubilee:

And in case you were wondering, there are two pubs, one of which dates back to the construction of the church, as apparently it was raised to accommodate the masons involved in that holy work. 

In addition, in the spirit of Mr Mainwaring, the village has an Old Bank, though it is now a family run restaurant, named The Good Food Guide Best Local Restaurant 2019 for the whole of Britain and soon after was also listed in the Michelin Guide.

The village is near the sea, just a 45 minute walk from the Wash, over 60 metre high Wild Ken Hill (renowned for its rewilding and for supporting the careers of Chris Packham and Michaela Strachan.....) and across the marsh, which used to be (and probably will be again) under the sea.

Indeed, although the weather this year has been dry and warm, there have been times when the heavens have opened:

Our garden, earlier this year

And the proximity of the sea, and the unpredictability of the weather, have taken their toll:

We moved here at the beginning of 2021, and our house is currently our home, for which I have no regret.

I won't claim to be a big fan of Graham Nash, but I recognise his temporary joy in living with Joni Mitchell. I have temporary joy in living with Amanda, though, as with everything, it won't last.

I cannot claim to be a big fan of Madness, either, though that depends on how you define the term. I can now sympathise with Mr Rochester when he fell for Jane Eyre, and I can empathise with Grace Poole (the stout, middle-aged, red-haired seamstress who works as a servant at Thornfield Hall, who is secretly the nursemaid and prison guard for the insane Bertha Mason.....) - though that is not the only reason I drink.....

But I do like Suggs, and Madness's Our House is a hymn of joy:

Our house, in the middle of our street

Our house, in the middle of our

I remember way back then

When everything was true and when

We would have such a very good time

Such a fine time, such a happy time

And I remember how we'd play

Simply waste the day away

Then we'd say nothing would come between us

Two dreamers

Daniel Woodgate / Graham Mcpherson / Lee Thompson / Christopher Foreman / Michael Barson / Cathal Smyth / Mark Bedford

Amanda, stuck at the top of our stairs

I'll light the fire

You place the flowers

In the vase

That you bought today

Staring at the fire

For hours and hours

While I listen to you

Play your love songs

All night long

For me

Only for me

Graham Nash

From Amanda's window

Our house, was our castle and our keep

Our house, in the middle of our street

Our house, that was where we used to sleep

Our house, in the middle of our street

Our house

Our House

Madness