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Queen Square Centre for Neuromuscular Diseases

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David...

is a patient with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

David - Chronic Inflammatory Demyelinating Polyneuropathy

What was your initial impression of the:

A. Day care

Treatment in Day Care has become a pretty slick operation. On arrival, the nurse on reception will direct you to the room you will be in and particular chair in which you will remain for the duration of your stay (for IVIg treatment).

You will be directed towards a nurse where a cannula will be put in your arm for intravenous treatment. One of the Senior House Officer's (SHO) will come round and ask to see you in a room. They ask after your health, listen to your chest, and possibly carry out some neurological tests.

The SHO will complete your drug medication chart which they will pass to your nurse, who will connect you up for infusion. The nurse or auxiliary will take your observations, blood pressure, temperature and pulse every four hours.

You will be offered breakfast, lunch and supper at allotted times during the day. A choice of newspapers is provided.

Depending on one dosage of IVIg the nurses will watch out for the bottles to be exchanged and take observations. Once your treatment is over the nurse will take out the cannula, take some blood samples and observations and then advise you that you can go home, to the Cotton Rooms or your booked hotel.

B. The ward

Patients are sometimes booked into one of the National Hospital for Neurology and Neurosurgery (NHNN) wards as the Consultant may wish to research a persistent problem that your condition shows up after period of study in which you will stay overnight, maybe for a few days.

Treatment can be administered in exactly the same way as above, but being on a ward is treated in a more formal manner.

C. Treatment at home

The NHNN is now able to offer a number of suitable patients treatment at home, and there are two methods of achieving this. Delivery of infusions can be administered by intravenous cannulation or subcutaneously.

In early 2015 given training, additional patients are being offered the opportunity of being treated at home. Our particular patient group is looking to fund further pumps during the next few years as the project develops and more patients are given the opportunity to be treated at home if they wish.


How long have you been a patient of the centre?

I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in 2000 by Professor Mary Reilly.

I first became aware that I had a balance/mobility problem in 1994 when I spoke to my GP. I was then referred to another Teaching Hospital.


How does your condition affect your day to day life?

Poor balance and mobility. I walk with the aid of a stick outside, and there is a need for frequent stops to sit down.

I have poor hand writing and I also have difficulty in tying my shoe laces and doing up my shirt buttons.


How regularly do you visit, and why?

I receive regular infusions of Intravenous immunoglobulin (IVIg) of 90 grammes for two days every three weeks which requires me to come to the hospital, where it takes a few hours.


How would you describe the staff?

Professional, caring, understanding and friendly with a good sense of humour.


How do the staff help you to manage your condition?

In a friendly, caring and understanding manner of one's neurological condition.


What happens if you have a problem at home and need to talk to somebody at the centre?

One would normally ring Day Care, speak to the nurse on reception, who would either answer the query or pass you to the SHO or Registrar, who will then deal with the query or ensure that you were given advice over the phone.

They may suggest contacting your GP or if in an emergency suggest 999.


How long do you usually stay for appointments?

Until I am discharged by the nurse or SHO on completion of one's treatment. I can be there all day.


What advice would you give patients who have recently been diagnosed with your neurological condition?

  • After a period of time one will open up to the nurses and/or other patients as you are there for much of the day. They are more than willing to discuss their own problems
  • Take with you your mobile phone, Kindle, book or magazine to occupy your time
  • Meals, coffees, teas and newspapers are provided
  • Be patient