Hilary Cass

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Hilary Cass

OBE FRCN FRCGP
Education City of London School for Girls
Royal Free hospital medical school
Occupation Paediatrician
Known for
Medical career
ProfessionPhysician
FieldPaediatric disability
Institutions
Research Neurodevelopmental disorders

Hilary Dawn Cass OBE FRCN FRCGP is a British honorary physician in paediatric disability at the Evelina Hospital, part of Guy's and St Thomas' NHS Foundation Trust, and former president of the Royal College of Paediatrics and Child Health. [1] She is known for establishing the UK's Rett Clinic for children with the neurodevelopmental disorder Rett syndrome, developing palliative care for children, and leading the Cass Review, completed in 2024.

Contents

Prior to Cass's appointment at the Evelina, she had been consultant at Great Ormond Street Hospital (GOSH) for 15 years. Her research and interests have included autistic spectrum disorders, cognitive impairment due to epilepsy, children with visual loss, and care of children with multiple disabilities.

In 2015 Cass received an OBE for services to child health. She was subsequently appointed chair of the British Academy of Childhood Disability.

Early life and education

Hilary Cass completed her early education at the City of London School for Girls. [2] [3] She studied at the Royal Free hospital medical school, graduating with a degree in medicine in 1982. [4]

Career

Cass spent her early medical career in a general practice training scheme, during which she changed to paediatrics. [5] From 1992 to 2018, she was a consultant in neurodisability at three tertiary centres in the UK. [1] Her research and interests have included autistic spectrum disorders, cognitive impairment due to epilepsy, children with visual loss, and care of children with multiple disabilities, particularly where there are difficulties with feeding and communication. [4] In this field she has higlighted that medical innovations have resulted in a greater survival rate of children with severe incurable diseases, with the result that there are a greater number of children with severe disabilities. [6]

Rett syndrome

In 1992 Cass founded the Rett clinic, a national outpatient service for children with the neurodevelopmental disorder Rett syndrome, based at the Evelina Hospital, part of Guy's and St Thomas' NHS Foundation Trust. [7] [8] She later reported that self-injurious behaviour in Rett Sundrome had a prevalence of 73.8%. [9]

Great Ormond Street Hospital

From 1994 to 2009 Cass was consultant in paediatric disability at Great Ormond Street Hospital (GOSH). [3] There, she was appointed director of Postgraduate Medical Education and held the post of deputy medical director. [4] During that 15-year period she also held some regional and national positions in medical education and policy development, including head of the London School of Paediatrics. [4] [10] At GOSH, she authored a book titled Snakes and Ladders , based on a programme she led that used role play to understand patient journeys in the NHS and to better skills of staff. [4] [11] [12] The book addresses communication between doctors and patients, and primary and secondary care. [12] Other topics covered include informed consent, medical negligence, medical paternalism, randomised controlled trials, and unlicensed treatments. [12]

In 2008 she published findings that did not support the opioid excess theory. [13] She reported on a large study she led that found no difference in urinary opioid peptide levels between those with autism and control subjects, and concluded that "opioid peptides can neither serve as a biomedical marker for autism nor be employed to predict or monitor response to a casein- and gluten-free diet". [13] [14]

Cass left GOSH after raising concerns about patient safety at the hospital. [15]

Evelina Hospital

Cass joined the Evelina Hospital as consultant in 2009. [16] There, she developed palliative care services for children. [1]

Cass Review

In September 2020, Cass accepted an appointment to lead the independent Cass Review for the NHS into gender identity services for children and young people. [1] [17] The interim report of the Cass Review was published in March 2022. [18] It said that the rise in referrals had led to the staff being overwhelmed, and recommended the creation of a network of regional hubs to provide care and support to young people. The report noted that the clinical approach used by the Gender Identity Development Service (GIDS) "has not been subjected to some of the usual control measures" typically applied with new treatments, and raised concerns about the lack of data collection by GIDS. [19] [20] [21] The recommendations resulted in the closure of GIDS. [22] The final report was published on 10 April 2024. [23]

Cass said after the publication of the review that she had received ‘vile’ emails and that she was not travelling by public transport after receiving security advice. She also said that she would not participate in the forthcoming review of adult gender clinics. [24]

Other roles

In 2012 Cass was appointed president of the Royal College of Paediatrics and Child Health for a three year tenure. [25] [26] Between 2017 and 2020 she was chair of the British Academy of Childhood Disability. [1] She is a trustee of Noah’s Ark Children’s Hospice, and was formerly chair of the charity Together for Short Lives. [1] [8]

Honours and awards

Cass was appointed an Officer of the Order of the British Empire (OBE) in the 2015 New Year Honours for services to child health. [27] [28] In the same year the Royal College of Nursing awarded her an honorary fellowship (FRCN), and the following year she received one from the Royal College of General Practitioners (FRCGP). [1]

Selected publications

Papers

Books

Related Research Articles

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Rett syndrome (RTT) is a genetic disorder that typically becomes apparent after 6–18 months of age and almost exclusively in females. Symptoms include impairments in language and coordination, and repetitive movements. Those affected often have slower growth, difficulty walking, and a smaller head size. Complications of Rett syndrome can include seizures, scoliosis, and sleeping problems. The severity of the condition is variable.

The diagnostic category pervasive developmental disorders (PDD), as opposed to specific developmental disorders (SDD), was a group of disorders characterized by delays in the development of multiple basic functions including socialization and communication. It was defined by the Diagnostic and Statistical Manual of Mental Disorders (DSM), and the International Classification of Diseases (ICD).

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Neurodevelopmental disorders are a group of conditions that begin to emerge during childhood. According to the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, (DSM-5) published in 2013, these conditions generally appear in early childhood, usually before children start school, and can persist into adulthood. The key characteristic of all these disorders is that they negatively impact a person's functioning in one or more domains of life depending on the disorder and deficits it has caused. All of these disorders and their levels of impairment exist on a spectrum, and affected individuals can experience varying degrees of symptoms and deficits, despite having the same diagnosis.

The epidemiology of autism is the study of the incidence and distribution of autism spectrum disorders (ASD). A 2022 systematic review of global prevalence of autism spectrum disorders found a median prevalence of 1% in children in studies published from 2012 to 2021, with a trend of increasing prevalence over time. However, the study's 1% figure may reflect an underestimate of prevalence in low- and middle-income countries.

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Autism spectrum disorder (ASD) refers to a variety of conditions typically identified by challenges with social skills, communication, speech, and repetitive sensory-motor behaviors. The 11th International Classification of Diseases (ICD-11), released in January 2021, characterizes ASD by the associated deficits in the ability to initiate and sustain two-way social communication and restricted or repetitive behavior unusual for the individual's age or situation. Although linked with early childhood, the symptoms can appear later as well. Symptoms can be detected before the age of two and experienced practitioners can give a reliable diagnosis by that age. However, official diagnosis may not occur until much older, even well into adulthood. There is a large degree of variation in how much support a person with ASD needs in day-to-day life. This can be classified by a further diagnosis of ASD level 1, level 2, or level 3. Of these, ASD level 3 describes people requiring very substantial support and who experience more severe symptoms. ASD-related deficits in nonverbal and verbal social skills can result in impediments in personal, family, social, educational, and occupational situations. This disorder tends to have a strong correlation with genetics along with other factors. More research is identifying ways in which epigenetics is linked to autism. Epigenetics generally refers to the ways in which chromatin structure is altered to affect gene expression. Mechanisms such as cytosine regulation and post-translational modifications of histones. Of the 215 genes contributing, to some extent in ASD, 42 have been found to be involved in epigenetic modification of gene expression. Some examples of ASD signs are specific or repeated behaviors, enhanced sensitivity to materials, being upset by changes in routine, appearing to show reduced interest in others, avoiding eye contact and limitations in social situations, as well as verbal communication. When social interaction becomes more important, some whose condition might have been overlooked suffer social and other exclusion and are more likely to have coexisting mental and physical conditions. Long-term problems include difficulties in daily living such as managing schedules, hypersensitivities, initiating and sustaining relationships, and maintaining jobs.

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<span class="mw-page-title-main">Cass Review</span> Review of gender identity services in England

The Independent Review of Gender Identity Services for Children and Young People was commissioned in 2020 by NHS England and NHS Improvement and led by Hilary Cass, a retired consultant paediatrician and former President of the Royal College of Paediatrics and Child Health. It dealt with gender services for children and young people, including those with gender dysphoria and those identifying as transgender.

References

  1. 1 2 3 4 5 6 7 "The Chair – Cass Review". cass.independent-review.uk. Archived from the original on 13 April 2024. Retrieved 13 April 2024.
  2. ↑ "Dr Hilary Cass OBE". City of London School for Girls. Archived from the original on 13 April 2024. Retrieved 13 April 2024.
  3. 1 2 Campbell, Denis (4 September 2012). "'We're doing medicine in a really inefficient way,' says RCPCH leader". The Guardian. Archived from the original on 12 April 2024. Retrieved 30 August 2015.
  4. 1 2 3 4 5 "Dr Hilary Cass". RCPCH. Royal College of Paediatrics and Child Health. Archived from the original on 13 April 2024. Retrieved 13 April 2024.
  5. ↑ Cass, Hilary; Mistry, Ravi (27 March 2013). "Championing children's health". British Medical Journal. 346. doi:10.1136/sbmj.f1775. ISSN   1756-1833.
  6. ↑ Goo, Minjin; Kim, Yujeong (11 March 2024). "Factors affecting nurses' attitude toward withdrawal of life-sustaining treatment for children" . Journal of Pediatric Nursing: S0882–5963(24)00085–X. doi:10.1016/j.pedn.2024.03.008. ISSN   1532-8449. PMID   38472026.
  7. ↑ "Rett clinic | Evelina London". www.evelinalondon.nhs.uk. St Thomas' Hospital. Archived from the original on 13 April 2024. Retrieved 13 April 2024.
  8. 1 2 "Dr Hilary Cass on her new role at Together for Short Lives and the future of children' s palliative care - ehospice". ehospice.com. Archived from the original on 17 April 2024. Retrieved 17 April 2024.
  9. ↑ Furniss, Frederick; Biswas, Asit B. (2020). "3. Neurobiology of self-injurious behaviour: Rett syndrome". Self-Injurious Behavior in Individuals with Neurodevelopmental Conditions. Springer. p. 68. ISBN   978-3-030-36015-3.
  10. ↑ Craft, p. 198
  11. ↑ Gandhi, V. (July 2006). "The NHS experience: The "Snakes and Ladders" guide for patients and professionals". Arch Dis Child. 91 (7): 625. doi:10.1136/adc.2006.095836 (inactive 14 April 2024). PMC   2082820 .{{cite journal}}: CS1 maint: DOI inactive as of April 2024 (link)
  12. 1 2 3 Sanai, Leyla (February 2006). "How to use the NHS". The Lancet. 367 (9511): 642. doi:10.1016/S0140-6736(06)68247-0.
  13. 1 2 Keith E., Keith; Field, Douglas G.; Alexander, Chandran P. (2019). "Autism and spectrum disorders and gastrointestinal problems: current state of the research and implications for practice". In Martin, Clarissa; Dovey, Terence (eds.). Paediatric Gastrointestinal Disorders: A Psychosocial Perspective. Taylor and Francis. p. 226. ISBN   978-1-909368-36-1.
  14. ↑ Fitzpatrick, Michael (2008). Defeating Autism: A Damaging Delusion. London: Routledge. pp. 198–199. ISBN   978-0-415-44980-9.
  15. ↑ Campbell, Denis (26 June 2013). "Great Ormond Street Hospital gagged top doctor after safety fears raised". The Guardian. Retrieved 30 August 2015.
  16. ↑ "Consultant takes office as the president of RCPCH". Guy's and St Thomas' NHS Foundation Trust. 11 April 2024. Retrieved 14 April 2024.
  17. ↑ Marsh, Sarah (22 September 2020). "NHS to hold review into gender identity services for children and young people". theguardian.com. Guardian. Archived from the original on 13 April 2024. Retrieved 13 March 2022.
  18. ↑ Freeman, Hadley (2023). "7. Mothers and the woman problem". Good Girls: A Story and Study of Anorexia. New York: Simon and Schuster. pp. 114–118. ISBN   978-1-9821-8983-9.
  19. ↑ Brooks, Libby (10 March 2022). "NHS gender identity service for children can't cope with demand, review finds 10 March 2022". The Guardian. Guardian. Archived from the original on 13 March 2022. Retrieved 13 March 2022.
  20. ↑ Bannerman, Lucy (10 March 2022). "Tavistock gender clinic not safe for children, report finds" . The Times . Archived from the original on 13 April 2024. Retrieved 29 March 2022.
  21. ↑ Dyer, Clare (9 April 2024). "Guidelines on gender related treatment flouted standards and overlooked poor evidence, finds Cass review". BMJ. 385: q820. doi:10.1136/bmj.q820. ISSN   1756-1833.
  22. ↑ Dyer, Clare (1 August 2022). "NHS gender identity service to close and be replaced by regional centres" . BMJ. 378: o1916. doi:10.1136/bmj.o1916. ISSN   1756-1833.
  23. ↑ "Final Report – Cass Review". cass.independent-review.uk. Retrieved 19 April 2024.
  24. ↑ Gecsoyler, Sammy (20 April 2024). "Hilary Cass warned of threats to safety after 'vile' abuse over NHS gender services review". theguardian.com. Guardian. Retrieved 22 April 2024.
  25. ↑ Craft, p. 226
  26. ↑ "Five minutes with... Dr Hilary Cass, president, Royal College of Paediatrics". The Guardian . 25 May 2012. Archived from the original on 12 April 2024. Retrieved 30 August 2015.
  27. ↑ "New Year's Honours lists 2015" (PDF). Government of the United Kingdom: Cabinet Office and Foreign Office. 30 December 2014. Retrieved 22 April 2024.
  28. ↑ "New year honours 2015: the full list". The Guardian. 30 December 2014. Archived from the original on 13 April 2024. Retrieved 30 August 2015.

Bibliography

Further reading

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Preceded by President of the Royal College of Paediatrics and Child Health
2012−2015		Succeeded by
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