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William’s Story. Information Sharing Module. Consultant Neurologist January 2007 William P is your patient. He was diagnosed three years’ ago with Inclusion Body Myopathy, a muscle wasting disease with no treatment or cure.

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william s story

William’s Story

Information Sharing Module


Consultant Neurologist

January 2007

William P is your patient. He was diagnosed three years’ ago with Inclusion Body Myopathy, a muscle wasting disease with no treatment or cure.

He is now 81, and currently still just about mobile. You have seen him today for his annual check up and have discussed his increasing

difficulty in walking, gripping and swallowing. There is no treatment you can give.

William asks if it will kill him, and says he really wants to know the whole truth. You explain that the most likely cause would be pneumonia, as he may not be able to cough, or choking because of difficulty in swallowing.

In your letter to the GP you suggest that a Speech and Language Therapist might help with the swallowing.


Speech and Language Therapist

May 2007

William P. 82, who has Inclusion Body Myopathy, a muscle wasting disease, has been referred to you for help in swallowing.

You advise that he should now eat only pureed foods and give him a diet sheet.

He seems very upset and says that he’s not sure how he will be able to manage – he has enough problems just heating up ready meals. He points out that he doesn’t have the strength in his hands to puree anything, so the choice is tinned soup, baby food or starving.

You point out that he could be fed through a tube at night; he said ‘Not likely’, and left.


District Nurse

December 2007

You call to give William P. 82, his flu injection, as his carer had phoned saying there was no-one who could take him to the health centre and even then, it is very difficult for him to walk.

While you’re there he chokes badly on a dunked biscuit, and you ask him if that happens often.

He says it does, adding that he’d rather die choking on a chocolate digestive than be bored to death in a care home.

You ask if he has any family, and he says he has a son living abroad.

When you suggest he should let his son know how difficult things are, he says he doesn’t want anyone to know.

He wants to stay in his own home and to be able to leave his house to his son.


Nutrition Nurse Specialist

January 2008

William P. 82, who has Inclusion Body Myopathy, a muscle wasting disease, has been referred to you as he may soon need to take nourishment at night through a tube into his stomach – a PEG.

You show him the PEG, explain how it works, including how to take care of it, and give him a leaflet.

He reacts very strongly when you explain how to clean it, saying that there is no way he will be having one of those – he can’t manage it by himself as his hands don’t work and he’s definitely NOT going into a care home.

He refuses to discuss it further, grabs his walking frame and leaves as fast as he can manage.


Community Psychiatric Nurse

February 2008

You used to visit William when he was very depressed following the death of his wife, who had also been your patient.

You were fond of him and had admired how he’d coped with his wife’s


Today you were passing and thought you would call in to see how he was.

He was tearful when he saw you at the door.

You were shocked to see how much weight he had lost, how ill he looked and how much wasted his muscle were.

He choked badly on the cup of tea you made him and said it happened often.


Accident and Emergency

March 2008

As a doctor on A&E you have just seen William P., 82.

He had a piece of meat from a tinned stew stuck in his gullet.

He tells you he has Inclusion Body Myopathy, a muscle wasting disease, which makes swallowing very difficult, so he shouldn’t be eating meat really… but he was sick of soup.

The meat eventually dislodges, but you suggest that he visits his GP to see if there is any additional help he can get.

You think he looks undernourished, his clothes are far too big and he is very thin.

He also walks with great difficulty.


Carer (Private Company)

June 2008

You have just started to care for William on occasion – he has a different carer almost every morning as far as you can see.

He seems very depressed to you and has great difficulty getting about.

He never goes out (he can’t manage the steps) and apart from you and the other carers he hardly sees anyone. He’s very wasted and only wants thin porridge for breakfast – even that makes him cough and choke.

He seems to live on soup that the boy down the road fetches for him, but when you offer to help he tells you to mind your own business.

You ask if you can tell your boss how he is, so she can get him some more support.

He says no, he doesn’t want any more people coming and poking their nose in. You record your concerns in his daily log, which he says is OK as no-one ever looks at it anyway.


Social Services

July 2008

You are William’s P’s assigned Social Worker.

You’ve only been in the job a few months, and have never met him; the existing care package is still in place.

You notice that some years before he had an assessment for a personal alarm, a chair lift and providing better access as there are steps up to the doors.

The work was never carried out.

There are no notes of recent contact on the file.

You make a note to visit as soon as you can.


Ambulance Service

June 2008

You have just responded to a 999 call to the home of William P., 83.

He had fallen last night and broken his ankle, and had not been found until this morning when the carer arrived.

He looks extremely emaciated and you are very concerned.

You don’t want to question him too much, so you chat to him about how he keeps his slim figure.

He tells you that he lives on soup, porridge and tea – that’s all he can eat now.

He says he can’t afford more home care, he doesn’t want to worry his son, and he does not want to leave his own home, so he just does what he can.