adaaaaaca adcacac adaca

1. Dr Dutta Atanu
Dr Ogbudu Henrypat

2.  12 years old female, EFN
 Problems:
 Enuresis & Poor bladder control
 Suspected Cow's milk protein intolerance
 Constipation
 Recurrent UTIs
 Bilateral grommets
 Right hearing aid & Left hearing Loss

3.  Patient is the 2nd out of 5 children.
 Mum is wheelchair dependent
 Dad is a full time carer for Mum, and drives
family every where. He does not work
 Family was evicted from home on 05/12/2016
due to inability to pay rent
 Now living in MK

4.  Mum reports she has a diagnosis of
transverse myelitis – but GP mentioned such
diagnosis has not been confirmed.
 GP has also advised that mum likely has a
personality disorder.
 Similarly, Health visitor to the house also
thinks Mum has a mental health problems.

5.  Obvious discrepancies and misinformation
being relayed to health professionals.
 Reported problems seem to be moving from
system-to-system and patient seem to be
over-diagnosed.
 Exaggerating symptoms
 Undergoing too many investigations

6.  Paediatricians
 Urology
 ENT
 Gastroenterology
 Rheumatology
 Dietician
 PT

7.  Treated for constipation and diarrhoea.
 AXR – Generalised colonic feacal loading.
 In 2015, had upper and lower GI endoscopy –
some eosinophilic lesions, no other
abnormality seen.
 Gastro team did this investigations following
mum's complaints and insistence.
 Currently on maximum dose ofCosmoCol per
day

8.  Treated for Lt hearing Loss & reduced
hearing on the Rt.
 Bilateral grommets
 Rt hearing aid
 However, there are concerns from the ENT
team as results of audiological tests done had
shown that EFN could hear better than mum
had described.

9.  In April 2018, mum requested for a referral to
the Rheumatologists to investigate for
Ehlers-Danlos syndrome.
 She mentioned patient was always falling
over, have very flexible joints, and her scars
takes long to heal.

10.  Referred and seen by the Rheumatologist
 Outcome: No evidence of musculoskeletal
hypermobility syndrome or EDS.

11. Issue No 1:
 In a recent OP clinic, Mum had reported that
EFN has had 4-5 UTIs over the past 12
months.
 However, from records, patient has not had
any confirmed UTI since 2015
 ? Seen in MKGH. One episode of admission

12. Issue No 2:
 During another OPA, Mum had mentioned
that patient has had UTI requiring hospital
admission at Milton Keynes Hospital and
treated with IV antibiotics
 Again, there is nothing on patient's BHT
medical notes to corroborate this.

13. Issue No 3:
 Following complaints of poor bladder control;
 In June 2016, EFN had bladder function
assessment done, which showed a normal
bladder function.
 She was started on oxybutynin but stopped
due to side effects (headache)
 Tolterodine was prescribed by the Urology
team as an alternative.

14.  Unfortunately patient didn't receive this
medication as mum reported that there had
been a problem with the local GP or
pharmacist regarding the medication.
 GP surgery denied this claim.

15. Issue No 4:
 June 2017, patient had a pre-assessment for
the video urodynamic studies.
 Urology Nurse, raised a concern regarding
the invasive nature of this procedure since
patient has got a normal ultrasound &
bladder voiding report, and had not tried
other anti-cholinergics.

16.  Mum did not respond to this.Which gives the
impression that mum really wants patient to
undergo this invasive procedure with no
strong indication.

17. Issue No 5:
 In Feb 2018, the urology team advised that
EFN follows the normal continence protocol
of voiding and medication before resorting to
urodynamic studies.
 However, mum kept insisting that patient
goes directly to have the urodynamic studies
as initial step .

18. Issue No 6:
 In Jan 2019, the UrologyTeam changed EFN's
medication fromTolterodine to Solifenacin.
 Mum claimed that GP had some concerns
regarding the suggested dose and having
been unable to contact the Urology
department had decided to discontinue the
medication.

19.  When contacted, the GP Surgery mentioned
that mum has not yet contacted the GP
regarding this new medication.

20. Issue No 7:
 Urology Nurse also explained to mum that as
per protocol, anti-cholinergic medications
would have to be tried, then urodynamic
studies and finally botox injection as last
resort.
 But mum went ahead to tell patient's school
that patient was going to have Botox
injection to the bladder.

21. Issue No 8:
 Urology team had advised that patient start
taking responsibility for drinking sufficiently
and visiting the toilet regularly
 Mum resisted this suggestion stating the
patient would not be able to manage her
‘slack bladder’ and ‘floppy colon’.

22.  In one occasion, Mum had mentioned to a
registrar at JRH that EFN had been diagnosed
of Ehlers Danlos syndrome.
 This was added to patients records, without
confirmation, and unfortunately led to
confusions.

23. Issue No 1:
 EFN showed no signs of bowel or bladder
issues in class, when this was raised, mum
stated that the issue was small and would not
be noticed.
 Mum had also told school that patient and
her brother had EDS, but unable to provide
medical letters backing this diagnosis.

24. Issue No 2:
 The school also reported that mum has not
given them patients urology protocol to follow
 i.e when to drink, when to void, what amount
to drink, as advised by Urology team.
 whereas mum had earlier stated that she had
given this plan to the school.

25.  The only information mum gave school was
that patient needs to wear incontinent pads
during the day because of her bowel and
bladder problems.

26. Issue No 3:
 School has also reported that there have
been several accidents and incidents
involving all the other children.
 However the none of the children are under
Child Protection order or social services care.

27.  Patient's voice is usually silent regarding all
these.

28.  Chromosomal alteration at 6p21.33 x 1 and
17p13.3x3, affectingTNXB gene affecting
TNXB gene linked to Ehlers-Danlos syndrome
and renal reflux.
 Seen by the ClinicalGenetics team

29.  Mum appears to have an agenda for
diagnosis.
 using medical terminologies in discussions
 Lack of consistency and evidence from mum
regarding ELN health
 Unwilling to accept or comply to specialist
advice
 Poor treatment compliance

30.  Opinions please?

31. THANKYOU