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• Transition for adolescents with learning difficulties and complex medical needs.
  Tamsin Woodbridge
  Published on: 22 March 2016
• WHICH ADULT PHYSICIAN KNOWS THIS CHILDHOOD CONDITION, SICKLE CELL DISEASE?
  M.Osita Nwaneri
  Published on: 22 March 2016

• Published on: 22 March 2016

  Transition for adolescents with learning difficulties and complex medical needs.

  • Tamsin Woodbridge, Paediatric Registrar
  • Other Contributors:
    • Jenny Tyrrell, Consultant Paediatrician

  Viner’s (1) article raises important points about the health care needs of adolescents ‘crossing the bridge to adult medical services’. We were disappointed that one important group were not included - adolescents with learning difficulties and those with complex medical needs .

  2% of the population have learning difficulties and within a hospital setting these patients are over-represented. Paediatric units...

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  Viner’s (1) article raises important points about the health care needs of adolescents ‘crossing the bridge to adult medical services’. We were disappointed that one important group were not included - adolescents with learning difficulties and those with complex medical needs .

  2% of the population have learning difficulties and within a hospital setting these patients are over-represented. Paediatric units will be familiar with the very disabled young person approaching 19 for whom it is difficult to identify the appropriate adult service. If a process of transition is not handled well, these patients may find themselves in difficult and unfamiliar surroundings when admitted age 20. Adult services are difficult to engage - medical teams feel ill equipped to manage these patients. Getting the process right and improving awareness of the needs of this group could improve the management of all those with learning difficulties.

  The MENCAP report ‘Death by Indifference’ (2) is essential reading. Six case stories are told of people with learning difficulties who died “early”. Their untimely deaths are thought to have been due to medical professionals not listening to patients or families and failing to investigate and treat appropriately.

  We are developing a transitional care policy for young people with complex medical needs in our Trust. We have had positive responses from our adult colleagues –physicians and nurses – who wish to get the process right. The recent Mental Capacity Act (3) as well as ‘Death by Indifference’ have raised awareness of the needs of this group. Paediatricians and children’s nurses need to proactively develop pathways of care for our patients and to support our adult colleagues in these services.

  1. Viner RM: Arch Dis Child 2008;93:160-163.

  2.’Death by Indifference’ :Mencap 2007

  3. Mental Capacity Act 2005

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  Conflict of Interest:
  None declared.

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• Published on: 22 March 2016

  WHICH ADULT PHYSICIAN KNOWS THIS CHILDHOOD CONDITION, SICKLE CELL DISEASE?

  • M.Osita Nwaneri, Pediatrician, Research Associate

  Survival in Sickle Cell Disease (SCD) has rapidly improved in the last 20 to 30 years. Contributory factors include universal newborn screening, prophylactic penicillin, adequate analgesia, and hydroxyurea. Another initiative that has worked excellently has been the 10 Comprehensive Care Centers in the USA.(1,2) These centers provide care for the SCD patient in a wholistic manner.(1)

  As a consequence of these ad...

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  Survival in Sickle Cell Disease (SCD) has rapidly improved in the last 20 to 30 years. Contributory factors include universal newborn screening, prophylactic penicillin, adequate analgesia, and hydroxyurea. Another initiative that has worked excellently has been the 10 Comprehensive Care Centers in the USA.(1,2) These centers provide care for the SCD patient in a wholistic manner.(1)

  As a consequence of these advances and better understanding of the pathobiology of the condition, more and more children are surviving into adulthood.(1) This poses a challenge to unprepared adult physicians. Like many other chronic conditions, the non-specialist could manage SCD if he is prepared during training. Thus as we talk about transition to adult care, one of the most difficult acts for a Pediatrician is to transit one's patient to a service that may not provide optimal care for that patient to a standard you as the Pediatrician will be satisfied with.

  Adult physicians must be prepared and trained properly for this rapidly increasing number of patients and how to manage their problems. Until such a time that Pediatricians are happy with the knowledge base of the adult Physician, many will continue to hang on to their recently turned adult SCD patients. Viner’s review has touched on other important aspects of transition, which are imperative if standards are to be maintained.(3)

  1. Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease: life expectancy and risk factors for early death. N Engl J Med. 1994;350: 1639-1644.

  2. Alan R. Cohen. Returns on long-term investments in sickle cell disease. Blood 2004 103: 3996

  3. Viner RM.Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Child. 2008 93(2):160-3. Epub 2007 Oct 17

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  Conflict of Interest:
  None declared.

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