Reference 2017-367

REF:            2017-367

Subject:       Duchenne on unplanned hospital admissions 




Please provide the following information which I outline below.  If you do not hold the information please advise if it is held elsewhere.  If only partial information is held then please provide that.

In this request I will make reference to neuromuscular conditions, muscular dystrophy, and Duchenne muscular dystrophy.

For the purposes of this request:

– Neuromuscular conditions refer to any such conditions, including all types of Muscular Dystrophy;

– Muscular Dystrophy refers to all such conditions including Duchenne Muscular Dystrophy; and

– Duchenne Muscular Dystrophy refers only to that specific condition

  1. Please provide information on the total number of unplanned admissions to your Trust for patients with the following conditions broken down by calendar year since 2011 including data for 2017 to date.  If you hold data by financial year then that is acceptable also:
  2. Neuromuscular conditions
  3. Muscular dystrophies
  4. Duchenne muscular dystrophy
  5. Please provide a breakdown of the reasons for the unplanned admissions e.g. Accident, breathing problems, etc. – this should be broken down by the relevant data sets that your Trust holds, (where appropriate) and by calendar year since 2011 including data for 2017 to date.  If you hold data by financial year then that is acceptable also.
  6.      Please provide the following outcomes broken down by calendar (or financial) years for each condition as detailed above:
  7. Discharged from A&E
  8. Admitted to hospital and subsequently discharged
  9. Died
  10. Please provide a breakdown of unexpected deaths of patients in your Trust broken down by the above conditions, and by calendar (or financial) years.
  11. Please provide details of any changes that your Trust has made to care and other policies as a result of unexpected deaths of patients with the referenced conditions in the time period stated.
  12. Please provide a copy of the protocols to be followed by all paramedic, ambulance and A&E staff dealing with an unplanned admission of a patient with one of the specified conditions.
  13. Please provide details of adaptations provided by the hospital in your trust for persons with neuromuscular (and other) conditions who may not be ambulant, or who may be unable to lift items such as cutlery, press buttons etc.  For example, provision of hoists, wash/dry toilets, adapted call buttons; intercom systems; modified cutlery; provision of staff to feed a patient who is unable to do so him or herself due to muscle wasting.
  14. Please provide details of the procedures the hospital in your trust follows if a physiotherapist is required at night for persons who have a neuromuscular condition, especially if physiotherapists are not normally on duty in the night.




We asked for clarification and never received a reply therefore this FOI request has now been closed.