Prader Willi Syndrome

For obvious reasons, alternate names have been put in place on these case studies.

‘KELLY’

From time to time, a private residential care organisation with extensive experience of providing residential care for people with PWS, particularly with rergard to sustained weight management, had received enquires from social workers or parents regarding people with PWS who were under 18. Whilst the oragnisation offered advice and support, there was very little they could offer in terms of practical help because of limitations imposed by the Residential Homes Act and The Children Act. With that in mind, they decided to organise a meeting on 15th June 1999 to explore ways in which they could do more to accommodate these requests.

In the meantime, the following scenario concerning ‘Kelly’ was unfolding:

Around 24 May 1999, an enquiry was recieved by the residential care organisation from a careers office regarding a client with PWS, Kelly, who was 17 years old. she was extremely overweight and there were serious concerns over her health. In January 1999, she weighed 95kg (14stone 13lbs) at just 145 cm (4feet 9inches) tall. They requested a brochure about the home for Kelly and also aksed for a brochure to be sent to Kelly’s social worker. The brochures were sent on 25 May.

10 June: Kelly’s mother, brother, friend and senior social worker visited and viewed the organisation, its specialist PWS groups homes, and met several residents. The mother expressed a preference for a particular satellite home, based on the compatibility of the residents and the facility of a ground floor bedroom

15 June: The previously arrnaged meeting to discuss possible exemptions for under 18s was held. The meeting was attended by management staff from the residential care organisation, two representatives from the PWSA (UK), and an inspector from the local social services Inspectorate Unit, and therefore Kelly’s social worker was informed by telephoned shortly afterwards that the organisation may well be in a position to accept Kelly at the preferred satellite home.

20 June: Kelly’s mother and friend attended the organisation’s annual barbeque.

21 June: The organisation received reports and other material about Kelly from her local senior social worker.

28 June: Kelly and her mother visited the organisation and the specific home which her mother had preferred When she saw the home, kelly also expressed keenness to go there. The PWS Liaison Officer from the residential home (not connected to the PWSA (UK)) attempted to contact the newly appointed social worker for Kelly to discuss her case. A message was left, but the social worker failed to return the call.

29 June: The PWS Liaison Officer again attempted to conatct the social worker. Again a message was left, but again the social worker failed to return the call.

30 June: The PWS Liaison Officer decided to contact Kelly’s senior social worker to discuss the case. The senior social worker explained that she was having a meeting with Kelly’s appointed social worker within the next few days to discuss the case in more detail. On the same day, the care organisation formally applied to its local social services to have Kelly exempted form the existing registration rules which governed the age of clients at her preferred home.

7 July: A letter was sent by the PWS Liaison Officer to the social worker stressing the urgency of this case, which she verbally acknowledged at a meeting on 14 July in Kelly’s local hospital. In the letter, the Liaison Officer stated:

“…. Finally, I am seriously concerned that admist the prevarication, the client’s chances of enjoying her 18th birthday hang in the balance. It may be that by the time the client arrives here, her deteriorating health condition will have already affected her chances of a relatively normal life expectancy. I would urge you to act with some alacrity for the client’s sake.”

14 July: A meeting was held at Kelly’s local hospital attended by the residential care organisation, their GP, a representative from teh PWSA (UK), Kelly, Kelly’s appointed social worker, kelly’s mother and friend, and a consultant physician confirmed in a letter:

“However, Kelly is clearly deteriorating now and the underlying problem is Kelly’s obesity, which is causing respiratory problems and in turn leading to cardiac failure … I believe that unless we can get control of Kelly’s weight reasonably soon - say within the next few months - she will deteriorate further and at that point we will be unable to salvage her.”

15 July: A letter was written by the residential home’s GP to the owner of the residential home following the meeting the previous day, which stated:

“It is my consideration that unless the client is very shortly removed to some establishment that has proven expertise to deal with problems, there is no doubt that the consequences will be extremely serious and will undoubtedly result in premature death.”

22 July: A letter outlining the care organisation’s fees was sent to the appointed social worker.

23 July: A conversation took place between the residential care home’s locla social services Registration Unit and the home’s general manager implying that there would not be a problem exempting teh client from the registration until she was 18.

30 July: The registration exemption was confirmed in writing by the local Registration Unit.

5 August: The PWS Liaison Officer recieved a letter from Kelly’s social services requesting a copy of the satellite home’s last inspection report and a copy of their registration. This was faxed the following day.

6 August: Various contractual documents were received from Kelly’s scoial services authority. Shortly after this, a representative telephoned to inform the home that Kelly had died the night before, hours before funding had all but been agreed.

It will remain a matter of some medical conjecture as to whether Kelly would have lived if she had been admitted to residential care a week or two weeks after the initial enquiry was made. The question remains: why were Kelly’s obvious health problems not addressed at an ealier stage in her life?

Postscript: A client placed at one of the care organisation’s satellite homes on 1st August 1999 lost 10lbs by 13th August 1999. The home subsequently admitted for people with PWS under the age of 18, who are now all over 18 and of whom, three are still at the home.