Autumn 2011 Survey

The Lee Spark NF Foundation conducted a one-month survey from the 14th Sept 2011 to the 14th October 2011. Survivors, bereaved or family members completed the survey upon their experience of NF (no particular time frame was required). We wanted to collate as much information as we could to understand how necrotising fasciitis can easily progress from a mere scratch to having an every day surgical operation. These questions were vital to ask in order to continue our project of raising awareness of necrotising fasciitis to the layman and to educate and work with all levels of medical staff.

Questions

We asked 9 questions.

  • Question 1 - Were you / they informed what bacteria had caused nf? If yes what bacteria was it?
  • Question 2 - Did you / they or a close member of your family have an infection before nf developed?
  • Question 3 - Had you / they been in hospital for surgery?
  • Question 4 - Did you / they have an injury or a cut before nf developed?
  • Question 5 - What part of the body was affected by nf?
  • Question 6 - How long were you / they in hospital as a result of nf? And how long in ICU?
  • Question 7 - How many operations did you / they have as a result of having nf? and did you / they lose a limb?
  • Question 8 - Are you a patient, relative or friend?
  • Question 9 - Would you like to help us further as a result of your reply? If so please provide us with your name, telephone number and email address. According to the Data protection Act of 1998

Replies

We had 60 responses from:

  • 46 survivors
  • 9 bereaved
  • 5 relatives as survivors were unable to complete this survey for themselves
Question 1 - Were you / they informed what bacteria had caused nf? If yes what bacteria was it?
  • 30 had not been informed what bacteria they had.
  • 60% where not informed that they had NF, therefore would not be aware that they were ill due to a bacterial infection.
  • 20% - were informed they had NF but were not informed it was a bacterial infection.
  • 10% - The patient was to ill to ask and their families were too distraught to ask more detail.
  • 10% only found out once they had read their hospital notes.
  • 22 had Haemolytic Strep group A….1 patient was also infected with Staph aureus
  • 2 had Group B haemolytic strep
  • 1 Morganella morganii
  • 1 Strep milleri
  • 1 C difficile – this is unusual as usually causes hospital or other antibiotic associated diarrhoea – other clostridia such as C. perfringens are more commonly associated with NF
  • 1 Staphylococcus epidermidis – usually harmless skin flora in patients with normal immunity. Perhaps may be the true causative organisms had died due to the antibiotics given before the operation?
  • 1 E coli with streptococcal nephretis and Allograft Grade B Rejection.
Question 2 - Did you / they or a close member of your family have an infection before NF developed?
  • 46 answered ‘no’
  • 14 answered ‘yes’
Question 3 - Had you / they been in hospital for surgery?
  • 39 – had not been in hospital for any surgery prior to NF
  • 21 – had been in hospital for surgery prior to having NF
Question 4 - Did you / they have an injury or a cut before nf developed?
  • 30 people had an every day incident i.e.; swelling or sustaining a cut after having a fall. Bruises. Insect Bites. Area on arm where a BT had been taken. Skin irritation. A tooth abscess. Blisters and boils. Needle injury. Root canal treatment. Cat scratch.
  • 17 said ‘no’
  • 13 had had surgery – 4 of which C sections.
Question 5 - What part of the body was affected by NF?
  • 11 right legs
  • 10 amputations above the knee and below the knee including feet.
  • 10 abdomen and torso
  • 8 groin and upper thigh
  • 7 stomach with intestines
  • 6 knee to thigh
  • 4 arm amputations
  • 4 complete right hand side from under armpit to knee including 1 mastectomy
  • 4 left hand side from armpit to thigh including 3 mastectomies
  • 4 thighs
  • 2 amputations of both legs
  • 2 back and tail bone
  • 2 head
  • 1 mouth
  • 1 face

Many patients have been affected by NF in 3 and 4 places at the same time.

  • To include pelvis with scrotum along with rectum.
  • Stomach with legs and bottom
  • Intestines, uterus and cervix.
  • Face, neck, both hands and right foot.
Question 6 - How long were you / they in hospital as a result of nf? And how long in ICU?

The combined actual stay (60 patients) in hospital was 9 years and 9 months. Of that period 11 months 3 weeks and 3 days were spent in ICU. (not taking into account HDU).

This period does not include the many appointments for further surgery averaging 2 weeks to 5 years plus. For reconstruction surgery, kidney dialysis, Physiotherapy, hernias, hysterectomies.

Our loved ones that passed away due to being undiagnosed earlier spent on average of 30 minutes to 6 days in hospital.

Question 7 - How many operations did you / they have as a result of having NF and did you / they lose a limb?
  • Out of 60 patients the numbers varied from 1 – 27 many of these require ongoing surgery.
  • 17 amputees
Question 8 - Are you a patient, relative or friend?
  • 46 were survivors
  • 14 were bereaved
Question 9 - Would you like to help us further as a result of your reply? If so please provide us with your name, telephone number and email address. According to the Data protection Act of 1998

All 60 patients/ bereaved gave their details freely. Their passion like ours for continuing to raise the profile of this deadly infection will continue.