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Diary of an NHS patient

Sir, — On December 14 I attended a business conference in London and then noticed my legs had begun to feel numb and disjointed.

I had become a victim of what is commonly called shingles, a type of viral infection that affects 20 per cent of adults who have had chickenpox.

The specific condition I had contracted is called Guillain-Barre syndrome. My life was about to change fundamentally in less than a week. It was also the week before Christmas.

My wife had planned an operation on her hand to take place at the Royal Berkshire Hospital in Reading early on December 20, so I drove her to the hospital in the morning and collected her, complete with a splint on her left arm, that afternoon.

My legs were worse than ever but I assumed it was from over-exercising.

The following day I finally admitted to myself something was seriously wrong and drove to Sonning Common Heath Centre to ask for an emergency doctor’s appointment.

I attended the afternoon surgery and was given an emergency appointment with Dr Nick Smith. Within a few minutes he had established I might have had a stroke and almost certainly had shingles.

I was told that one in five people who has chickenpox is likely to get shingles at some time later in life as the virus remains in your body.

Dr Smith immediately phoned the accident and emergency department at the Royal Berks and spoke to their head of admissions to request a bed and a CT scan.

By 4.30pm I was in the A&E ward being examined by the duty doctor. The rash on my back, which I could not see, caused concern.

First I was given a CT scan that confirmed I had not had a stroke. So, what was causing my body to seize up?

First my legs and now my belly felt numb and my arms had no strength. Blood samples were taken and a lumbar puncture. I was seriously concerned.

A neurological consultant, Dr Marko Bogdanovic, mentioned Guillain-Barre syndrome, or GBS, an auto-immune virus related to shingles.

He carefully explained the potential life-threatening risks and the essential need for his team to keep me breathing, if necessary using artificial aids.

By this time my chest was also feeling numb and I had lost all strength in my legs, arms and body. I was really scared.

On Saturday it was confirmed that I had GBS and I was told how this illness could develop. At one extreme the virus could prevent my breathing without permanent assistance. At the other, if I was fortunate, my body would be able to fight it.

The best treatment requires five days on an intravenous immune globulin drip. In essence, this is immunity that can be conferred from the blood of other healthy people.

It is concentrated into a solution that is drip fed into the patient, along with some other complementary medicines. This was Christmas Eve!

Then followed five nights of nightmares and back pain as the drugs started to work.

I was blessed with family and friends visiting me. All of them were seriously worried because no one really knew what the outcome may be.

Another source of pain was from acute constipation. I was feeling so ill and also having “terror nightmares” that I finally requested a short break between each of the five treatments.

For the six days of drip therapy I tried not to worry but it soon became clear that every doctor and other members of staff with any knowledge of GBS believed I would be in hospital for months.

I remembered, with a degree of irony, how the week before that I had made a commitment to write an article about my new electric bike. Now I couldn’t walk and had to be helped from my bed to a commode.

My latest blood test proved I also had influenza, so another tablet was added to my twice-daily cocktail of tablets, injections and the taking of blood samples.

Come New Year’s Eve, I was determined to try using a Zimmer frame in 2018. I was very shaky but I forced my body to swing my legs out of bed and slowly shuffle to the nearest toilet.

I also tried to force my legs to do a series of exercises. Some of these are part of Pilates courses. Every muscle in my body ached or was numb but I could finally experience some sort of feeling other than nothing or numbness in my legs.

Every two hours I forced myself to swing my legs out of bed, seize my Zimmer frame and slowly tried to walk to and from the toilet. It was exhausting.

I could not sleep from the pain in my back and from the acute constipation. I was prescribed a series of laxative solutions. Then I wandered to and from the bathroom, day and night, every two hours.

After the New Year holiday, I was visited by two dermatologists who decided I did not have shingles but another type of viral infection of the skin: I would need another antihistamine tablet to try to cure it.

They also explained that my main treatment, the drip, was complete and I now needed to focus on rehabilitation.

So I asked what would eventually convince doctors, nursing and all administrative staff to discharge me? The key evidence would be my ability to walk up a flight of stairs unaided.

So, in the early hours, I sneaked out of Victoria ward with my Zimmer frame and started practising what I had to do before I’d be allowed to be discharged.

I practised walking every two hours, then practised walking up and down the stairs. Few people were around. I finally shuffled back to bed.

On Thursday, January 3, I received another visit by the neurological physiotherapists. I asked them to check on my mobility and my progress. Then I managed to walk through the ward to the stairs and up and down a flight of stairs unaided.

It was decided to discharge me because I could now walk up and down a flight of stairs unaided. Now home again, I can focus on rehabilitation and regaining my life once more.

However, nowhere else in the world would I have had such swift and effective treatment, free at the point of need. — Yours faithfully,

A 77-year-old patient

‘Little people’ treated badly

Sir, — I was interested and intrigued to read James Presland’s article entitled “More patients criticise NHS aftercare provider” (Standard, December 28) and the lack of after care that I had received.

However, the article was not quite correct as it implied that I had contact with a company called Healthshare, which apparently now runs the musculo-skeletal service in Oxfordshire.

In fact, I have never heard of this organisation.

At no time was I offered or informed about this service either by the Royal Berkshire Hospital or my local health surgery in Sonning Common.

If it is the case that patients must organise their own aftercare provision, then we need to be told. The specialist orthopaedic registrar that I contacted at the hospital and saw me two weeks ago told me that the permanent muscle wastage in my leg is as a direct result of no physiotherapy in the days after my fall.

Similarly, early intervention and intensive structured brain exercise may also have helped me regain use of the part of my brain damaged by my stroke.

It is too late now. The damage both to my leg and my brain is irreversible.

The NHS is in crisis and it is the “little people” like me who suffer the consequences. — Yours faithfully,

Chrissie Godfrey

Birch Close, Sonning Common

Who does what where

Sir, — The Henley Standard has run two stories in recent weeks about people’s experiences of NHS physiotherapy services in Oxfordshire. I would like to clarify how physiotherapy services are organised in the county.

Musculo-skeletal physiotherapy services are for people suffering from joint, muscle, soft tissue injury or back pains that are not getting better on their own, or are causing someone to struggle to walk or use a part of their body.

These NHS services, including podiatry, are provided by Healthshare, which was awarded the contract by Oxfordshire Clinical Commissioning Group in October 2017 after a lengthy consultation process with health service providers and patients and a competitive bid process.

Healthshare offers appointments at a number of locations across the county, including Townlands Memorial Hospital in Henley, Wallingford Community Hospital and Woodlands Medical Centre in Didcot. Appointments are offered according to medical priority.

Patients who raise issues or complaints regarding their experience or care are invited to provide formal feedback directly to Healthshare or to the commissioning group’s patient services team. All complaints are answered individually.

The feedback is used to continually improve the service and the commissioning group meets regularly with Healthshare to review progress.

We have a range of ways to rapidly meet patients’ needs in the event of a stroke, which is a medical emergency.

Health professionals will work with patients and their families to access the fastest and most appropriate care.

Healthshare is not contracted to provide stroke rehabilitation services. Outpatient stroke rehabilitation is provided by the multidisciplinary team at the Oxford Health NHS Foundation Trust and, for inpatient care, it is either Oxford University Hospitals Foundation Trust or Royal Berkshire Health Foundation Trust, depending on where people live.

If a patient has an acute stroke they will be treated immediately at their nearest hyper acute stroke unit — in the case of patients in South Oxfordshire this is likely to be at the Royal Berkshire Hospital in Reading.

Patients who require further rehabilitation could move to a local stroke unit for ongoing support.

South Oxfordshire acute stroke patients who are treated initially at the Royal Berks will get their ongoing stroke rehabilitation in Oxfordshire.

The stroke rehabilitation units are at Abingdon Community Hospital and the Horton General Hospital in Banbury.

Patients could also be discharged directly home from the stroke unit with rehabilitation at home provided by the early supported discharge for stroke service.

Specialist therapists work together with the nurses and doctors to help patients regain as much independence as possible following a stroke.

Therapy will start from day one post-stroke as long as the patient is medically stable and may continue for some time. — Yours faithfully,

Diane Hedges

Chief operating officer, Oxfordshire Clinical Commissioning Group

Frightened by hunt

Sir, — Myself, my wife and my daughter were confronted with the sight, the hullabaloo and the fear instilled by foxhounds and horse riders thundering through New Copse woods opposite Bishopswood, near Gallowstree Common, at 2pm on Saturday, December 29.

There were about 12 riders and 20 dogs racing through the woods on routes that are not all designated as bridleways and which are frequented by dog walkers.

The walkers that I saw looked traumatised by the horses and hounds speeding through the woods.

There were also two quad bikes linked to these hunters patrolling the area.

These people on horseback left the paths churned up; their dogs appeared out of control, although not aggressive to humans, and at one point bounded through a barbed wire fence — heading for a copse on private land — that could well have injured the poor beasts.

Regardless of their legal/illegal intensions, these people and their hounds terrorised us walkers, our dogs and also the horses that were in fenced-off fields that border the woods.

While the dogs could get into the horses’ enclosures, the horses were trapped in their fields and were visibly disturbed.

If the actions of these huntsmen and women were legal, how can this be?

And if those actions were illegal did the owners of the woods (Tilhill Forestry) give permission and, if not, what can be done about it? — Yours faithully,

Arthur P

Shiplake Bottom, Sonning Common

Chris Austin, joint master of the Kimblewick Hunt, responds: “We are always extremely courteous to other users of the countryside.

“Everyone is entitled to enjoy the countryside and we always make sure we make plenty of room, so I am surprised if Mr P was concerned.

“Some people are frightened of horses but we usually move over and let people through. We are at pains to make sure that everyone using the countryside has a good experience.

“If we meet walkers on a track or road we usually move over and see if they can get by.

“The hunt does not stick to bridleways. We are not confined to public bridleways because we get permission from the landowners.”

Swans are territorial

Sir, — Your report and Diana Gittings’s letter about the cygnet at Marsh Lock in Henley on Christmas Eve was most interesting (Standard, January 4).

I live on the site of the old mill and we are surrounded by wildlife, in particular swans.

Last year was a bumper year for the swan population here and both the pair upstream of the lock and “our own” pair at the bottom of the garden each produced eight cygnets.

However, there are a couple of races beneath the mill and if tiny cygnets are drawn too close, they are automatically dragged downstream by the force of the waterfall and cannot get back, nor can their parents retrieve them.

This happened in May when four cygnets from upstream suddenly appeared with our eight.

As they were still only just over a week old, our cob and penn reluctantly accepted them and so there were 12 downstream and just four above.

All the cygnets are now fully grown but still cannot fly. So obviously when one of the four upstream strayed downstream, either via the lock of over the lawn of our neighbour, our pair would have had no hesitation in trying to kill it.

Just now is the season when the adults strike territory prior to nesting and mating and so shoo away their own teenagers, so that they can get on with it!

Therefore, the one attacked just before Christmas could have been one of their own breed.

I wonder where the Swan Rescuers eventually returned the injured cygnet? — Yours faithfully,

Enid Light

Wargrave Road, Henley

Unexpected benefit

Sir, — It was interesting to find the traffic lights in the centre of Henley were not working on Monday morning,

If this was an experiment to see the effect on traffic flow it appeared to be successful as there were no queues in Hart Street or Duke Street.

Pedestrians also seemed able to cope. If it was just a fault, perhaps the lights could be turned off in the middle of the day for a trial period. — Yours faithfully,

Andrew Hawkins

Berkshire Road, Henley

Impeccable shop service

Sir, — With the woes of the high street retailers making front page headlines, can I take the opportunity to highlight what I consider to be the exceptional service I received in the Henley branch of WH Smith?

Without going into all the detail, I made a purchase in store, took it home, unpacked it and installed it, only to find I had made a mistake and bought the wrong version of the product that I needed.

Within the hour I returned to the store with, I thought, little hope of a sympathetic hearing, packaging under one arm and incompatible product under the other.

With the minimum of fuss and in double quick time, the very efficient Steven had replaced my “mistake” with the correct, slightly less expensive product and transacted the consequent refund.

So, one up for buying local. Thank you, WH Smith, and thank you, Steven. — Yours faithfully,

Craig Breeze

Shiplake

Same name, not business

Sir, — As the proprietor of the former Henley Cycles shop in Reading Road, Henley, for nearly a decade, it is with some surprise that I heard of the forthcoming opening of Henley Cycles in Duke Street.

I would like to point out that this new venture has nothing to do with me, the owner has simply appropriated my old trading name.

Whilst I wish Mr Acock the best of luck, it would have been courteous of him to ask to use my name.

I would appreciate it if you could publish this letter to avoid any confusion between my business, which closed last year, and the new business that has exactly the same trading name. — Yours faithfully,

James Miller

(Former) Henley Cycles

Reform EU by staying in

Sir, — Thank you to readers who took the trouble to read my letter (Standard, December 14).

Many were critical and I would expect nothing less. I am not going to start a pointless argument with any of the points raised but I am amused and heartened by the notion that I am a young man by Adrian Vanheems and Michael Emmett.

If I survive a few more weeks I will be 82, old enough to have experienced something of the last war, albeit as a child, and a lifetime of experience, both inside and outside the EU.

I did not vote to go into the EU but we are now far too committed to back out. I am not a member of any political party and I endeavor to be independent and liberal.

I also noted that most of the comments were negative and provided little or nothing to support their case, other than imaginary hopes.

I acknowledged in my letter that there are many who have an inherent dislike of the EU and they have a perfect right to do so but here lies the crux of the dilemma.

We are a divided nation from top to bottom and I put the blame not on the voters, but entirely on politicians.

Nigel Farage has done us a great mischief by misrepresenting us for years in the European parliament. There is no better deal on offer than the one we have inside the EU and there are only a few choices left.

Theresa May’s deal will not be approved, it seems, by her own party despite attempted coercion.

A no deal option is only supported by the reckless Brexiters who are prepared to risk all.

We have the option of a people’s vote but this time it must have parameters to make it effective. I would suggest at least a 20 per cent margin to make it acceptable.

If this is not achievable, then cancelling Brexit is the only way out of this disastrous impasse.

There are many reasons why this is the best option and to name but a few:

1. It is the only way to keep faith with Northern Ireland and keep the Union as one nation.

2. Industry and commerce can continue trading without interruption with access to our most lucrative market. No traffic jams at UK and EU ports. A continuous supply of medicine without stockpiling etc. Trade deals are most effective when made inside the EU.

3. We need the co-operation of the EU for security.

4. For those of you who use Facebook, look on the timeline of David Peter Broadhurst who suggests 98 reasons to stay in the EU.

Even with a consensus, it will take years to repair the damage of the referendum to our society.

We were once a powerful and sovereign nation and created the industrial revolution.

A proud island nation, you might say, until you remember that the great wealth of our nation, and incidentally the church, was created by supplying large numbers of African slaves to America and exploitation around the world.

Many of the older generation still live in the past and are unable or unwilling to accept that the young generation, who are our future, have a more progressive and inclusive attitude.

If you are so convinced that a leave vote is still the will of the people, why would you not want to put it to it the test and strengthen your case? Could it be that you are not that confident?

This is not a case of frustrating the will of the people, it is to confirm it, but all options must be on the table. It would be no less divisive but it would be familiar territory and less risk to our economy and trade.

Avoiding the pressure for a third vote is a simple matter. Put a box at the top of the ballot paper, saying: “Tick the box to agree to abide by the verdict and the terms of the vote. Failure to do so means that your vote will not be counted.”

The EU is not without its many faults but it must surely now see the writing on the wall. Reform is essential if it is to survive.

If Brexit can achieve that, then it may, just may, have been worthwhile. — Yours faithfully,

Edward G Hallett

Longfield Road, Twyford

Secure our borders

Sir, — With regard to John Morrow’s letter (Standard, January 4), I fully acknowledge the very valuable contribution made by those immigrants who have settled here and work hard for our benefit.

However, there are others who are unwilling to stay in European countries as they know we are a soft touch.

The uncontrolled migration in Europe has caused trouble in Germany, France, Sweden, Norway and Italy.

The Channel has saved us from the worst of this but more stringent patrols by our Border Force vessels are needed urgently. — Yours faithfully

Adrian Vanheems

Baskerville Road, Sonning Common

We must have another vote

Sir, — Some Brexiteers have suggested it would be undemocratic to hold a second EU referendum.

Others have said that if we don’t leave the EU as a result of a second vote, there could be civil unrest.

The first statement is nonsense and the second is even more of a reason to have another referendum. How could a second referendum that votes to stay in the EU be undemocratic? By definition, a majority of people would have voted to stay in. In fact, the opinion poll evidence of the last 18 months suggests that is exactly what would happen by a large majority.

If we leave, it will now be against the will of the people.

And if some are contemplating civil disobedience if we stay in, then that is all the more reason to hold the vote.

If we do bow to those that threaten us, our democracy and freedom of speech is in deep trouble. We cannot let threats of unrest be the reason for not holding a second vote.

The only way to stay in the EU democratically is to have a second referendum.

We owe it to ourselves to have a final check that we are doing the right thing on this, the biggest decision for our country in decades. — Yours faithfully,

Robert Thompson

Henley

Not enough homework

Sir, — When walking my dogs around Peppard I came across this school report in a hedgerow which I think your readers need to see as it involves a local lad who is making a lot of noise.

“Dear Mr Emmett,

I am writing to you about your son Michael before term starts again.

I had always thought that Michael showed real promise. Here at the Brexiteer School we promote the true values of a flat earth society; we dream of a world not as it is but how we imagine it used to be.

In order to ensure our students go out into the world as effective Brexiteers we run important classes in basic abuse of Remainers, graduating to higher levels of abuse.

I was hoping that Michael might one day be awarded the coveted Boris prize named after a former MP for Henley whose name we can all remember.

Now Michael’s homework published in the school magazine, the Standard, just after Christmas was simply sub-par.

He had the opportunity to be really rude to that local arch Remainer Adrian Hill but he failed to do so.

While his letter had the occasional non-sequitur, like when he said he knew the name of the MP for Henley but didn’t actually give it or implying that somehow the Maybot fudge was acceptable but then taking it away in the last paragraph, it simply did not contain enough examples.

We have higher standards here. Some misleading statistics should have been used. The vitriol should have been far better targeted.

Only towards the end of his letter did Michael get into his stride with a very good paragraph about betrayal by woeful weak politicians who couldn’t negotiate their way out of a paper bag.

This shows he can achieve work of a higher standard for the Standard.

I would strongly advise you take back the controller when Michael is watching TV and get him to practise proper abusive letter writing. — Yours most unsincerely,

John Michael Gove Rees Mayson

Headmaster, Brexiteer School, Flat Earth Manor, Maidenhead”

I hope this is of interest. — Yours faithfully,

Adrian Hill

Badgemore, Henley

Short and simple

Sir, — Many years ago The Times had correspondence on the subject of the length of readers’ letters.

The best one was:

“Sir, — Brevity. — Yours etc” — Yours faithfully,

Roger Lightfoot

Caversham

Wonderful local derby

Sir, — Having watched the Henley Hawks play The Rams (Reading) — a top-of-the-table local derby — I felt compelled to say a thank-you to Henley Rugby Club for hosting a wonderful afternoon of just fantastic sport.

It was a game of attrition with The Rams dominating the forward play.

Henley, however, scored a breathtaking try just as the half-time whistle blew. 5-0 to Henley.

The game resumed after the break in the same vein with some great play from both sides (the referee did a really good job throughout) and it was all square at 12-12 with only a few minutes left on the clock.

The Rams scored the winning try in the 83rd minute to clinch what was a brilliant game of rugby.

Thanks, Henley Rugby Club, for a great game and best wishes for the next half of the season. You deserve it.

I would encourage everyone to come down and support the Hawks. — Yours faithfully,

Matt Murton

Henley