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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 hospital (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:
a. Neuromuscular conditions – this includes any peripheral neuropathy, guillain barre syndrome, myasthenia gravis, any primary muscle disease, this is a very wide classification including lots of different conditions
b. Muscular dystrophies – includes Duchenne, Becker, myotonic dystrophy, and any genetic muscular dystrophy
c. Duchenne muscular dystrophy – these will be mostly children, mostly male
2. 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 you hold, broken down by hospital (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.
3. Please provide the following outcomes broken down by the same hospitals (as appropriate), calendar (or financial) years for each condition as detailed above:
a. Discharged from A&E
b. Admitted to hospital and subsequently discharged
c. Died
4. Please provide a breakdown of unexpected deaths of patients in your Trust broken down by the above conditions and by the same hospitals (as appropriate), and by calendar (or financial) years.
5. 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.
6. 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.
7. Please provide details of adaptations provided by hospitals 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.
8. Please provide details of the procedures hospitals in your trust follow 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.

Download response Neuromuscular conditions. 151217