Funding: University of Bristol
Contact: email@example.comMore information
Background and study aims
There is considerable public concern about men who commit sexual offences. Such men are typically offered group cognitive behaviour therapy (CBT), both in prison and in the community. This form of therapy for sex offenders has been repeatedly evaluated and most trials have found it to be effective in reducing reoffending. However, men who show harmful sexual behaviours (HSB) and have intellectual and or developmental
disabilities (IDD) have often been excluded from this form of treatment so that in the past they have rarely been offered CBT.
This proposed research project aims to evaluate the effectiveness of the SOTSEC-ID CBT group for men with IDD and harmful sexual behaviour, using the gold standard method for evaluating the effectiveness of treatments, i.e. a randomised controlled trial.
Who can participate?
Men with intellectual and/or developmental disabilities and harmful sexual behaviour
What does the study involve?
The plan is for groups of men with IDD who show harmful sexual behaviours to be assessed for sexual knowledge, victim empathy, cognitive distortions, and harmful sexual behaviours, and then the groups will be allocated randomly to be treated with SOTSEC-ID group CBT (with risk management) or TAU (treatment as usual). The men will be re-assessed at the end of six months and followed up at 1 year (all groups) and 2 years(intervention groups only).
What are the possible benefits and risks of participating?
Possible benefits include improvements (reductions) in harmful sexual behaviours, and cognitive distortions, and improvements in sexual knowledge and empathy. Risks include that this is lengthy treatment and intensive which may not suit everyone.
Funding: National Institute for Health and Care Research, Health Technology Assessment UK
Contact: Professor Regi AlexanderMore information
Brain in Hand helps people with autism or anxiety-related mental health challenges to manage their lives, remember things, make decisions, and cope with stress. It offers personalised, one-to-one support and web and mobile software tools.
Funding: Small Business Research Initiative (SBRI) award
Contact: firstname.lastname@example.orgMore information
People with intellectual disabilities (PwID) are a vulnerable group at increased risk of all types of abuse who are often further disadvantaged by being unable to describe what has happened, their feelings or emotions. PwID exposed to traumatic events, particularly abuse, display typical symptoms of post-traumatic stress disorder (PTSD) (anxiety, flashbacks, recurring nightmares), as well as more complex presentations of PTSD (difficulty in regulating emotions; feelings of shame, fear, guilt and worthlessness; difficulties in sustaining relationships and feeling close to others), and are also likely to display challenging behaviours. These patients are at risk of not receiving treatment for PTSD, being given inappropriate medication as 'treatment', or admitted to a mental health hospital where they remain for long periods at further risk of traumatic experiences. They require support from skilled and specialist NHS intellectual disability (ID) services. Lack of timely effective psychological treatments carries a high human and financial cost. Intervention: We do not know if treatments used with the general population would be effective or provide value for money when used with PwID, as there have been no controlled trials of psychological therapies for PTSD in PwID. This study aims to address this need.
Funding: National Institute of Health Research Health Technology Assessment Award
Contact: Professor Paul WillnerMore information
The clinical and cost-effectiveness of the Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) programme for adults with Intellectual Disability (ID) and Type 2 Diabetes.
This is a trial to ascertain if providing a structured education programme on managing Type 2 Diabetes and maintaining a healthier lifestyle helps people with Intellectual Disabilities manage their blood sugar levels.
Funding: Ulster University
Contact: Professor Regi AlexanderMore information
The benchmarking and service evaluation projects on our portfolio aim to assess the standards of care offered to patients with neurodevelopmental disorders.
1. Patient and Carer Rated Outcome and Experience Measures in Intellectual Disability Services (Chester V et al): The NHS Five Year Forward View (NHS England, 2014) emphasises outcome measurement within the three domains of effectiveness, safety and patient experience, to include the perspective of patients and their family carers. However, the feasibility of administering commonly used outcome measures to patients with intellectual disabilities had not been explored. The project follows on from a quality improvement (QI) project which evaluated the clinical utility of currently available outcome and experience measures for patients with intellectual disabilities and their family / carers. This QI project identified several issues with currently available measures, such as their inaccessibility to those with intellectual disabilities, or including domains not relevant to those with intellectual disabilities or their family carers. The current project therefore evaluates a few adapted outcome and experience measures for this population and is the first step towards benchmarking the perceptions of patients and their family carers on outcomes and experience.
2. Treatment outcomes from assessment and treatment units for people with an intellectual disability and mental health difficulties: a longitudinal study (Amiola A et al): People admitted to assessment and treatment units are often highly heterogenous, with complex needs and personal histories of trauma. The aim of this work is to assess the effectiveness of inpatient treatment for this population.
3. A Survey of Experts by Experience, Health amp; Social care Professionals about the effectiveness of Care and Treatment Reviews (CTRs) (Purandare K, Amiola A, et al): Care and Treatment reviews are meetings held about adults with LD and or Autism either at risk of admission to or currently detained in an inpatient psychiatric unit. The aim is to avoid admission where possible or to facilitate a discharge. The aim of this work is to assess the effectiveness of CTRs from the perspective of experts by experience and professionals drawn from multidisciplinary backgrounds.
4. Mental Health Review Tribunals, Virtual Hearings and Intellectual Disability (Sawhney I, Amiola A et al): The Mental Health Tribunal is a panel which detained patients have a right to apply to, so they can be discharged from their section. In the wake of the COVID-19 pandemic many meetings including MHRTs are now being conducted virtually; this work aims to look at necessary reasonable adjustments that should be made to ensure that individuals with Learning Disabilities can participate appropriately in the tribunal.
5. Effectiveness of a Community Forensic Learning Disability Team (Flowerdew R et al): Service evaluation of the first 12 months of a new community forensic learning disability team.
6. Weight Management in Forensic Intellectual Disability- The CALMPOD-ID Experience (Amiola A et al): Obesity is a global emergency with rates increased even more in patients within in-patient mental health settings. A mindfulness technique called CALMPOD (Compassionate Approach to Living Mindfully for Prevention of Disease) has recently been reported to be effective for weight management within a Tier 3 obesity service in the UK. This project is an evaluation of the effectiveness of an adapted version of CALMPOD, the CALMPOD-ID programme, within a forensic in-patient unit for people with an intellectual disability (ID).
7. Avoiding Inappropriate Admissions to Inpatient Care (Smith A et al) : An Evaluation of the Community based Enhanced Assessment and Treatment Service for People with Intellectual Disability, Autism, and Mental Health Problems
8. Proposal to evaluate the visual easy read version of the 10-point-treatment programme (Marler H et al): An evaluation of the 10 point-treatment programme in easy read format.
9. Proposal to evaluate newly introduced outcome and experience measures for in-patient learning disability patients in Norfolk (Clarke S et al): Measuring the experience of treatment for patients and measuring the outcomes of that treatment are two important parts of evaluating health care services. These two areas are often described together as ‘outcomes’. The three supra-domains in terms of ‘outcomes’ are treatment efficacy, safety, and patient experience. Traditionally, in-patient services only used clinician rated outcome measures of efficacy, eg: HONOS-LD or HONOS-secure. Later, patient and carer rated experience measures like the Friends & Family Test were mandated by the NHS. Following a review of literature and an extensive, externally facilitated, consultation exercise with patients, family members and professionals, three outcome measures were identified as the tools for measuring treatment outcomes and patient experience within in-patient services in learning disability within HPFT. The aim of this audit is to evaluate the outcome and experience measures for in-patient disability patients in two hospitals within Norfolk.
10. STOMP audit of community learning disability patients in Norfolk (Tharian R et al): The STOMP audit of the use of psychotropic medication enables providers to develop an overview of how these medicines are managed.
11. Monitoring of treatment response and side effects of antipsychotic medication, in patients with and without intellectual disability (Smith N et al): Antipsychotic medication can play a crucial role in the treatment of psychosis and associated mental distress; this applies to those patients with and without co-morbid intellectual disability. However, patients’ response to antipsychotics will vary based on dosing, medication interactions, class of antipsychotic, co-morbid health problems and idiosyncratic physiology. There is an equally complicated picture for the side effects profile, and the severity of these side effects can vary from those which are unpleasant to those which are potentially life threatening. As such, it is possible that patients are prescribed antipsychotic medication that offers low clinical benefit for symptoms but high burden of side effects, effectively causing more harm than benefit. For this reason, it is imperative that both the benefit of treatment and side effects are assessed regularly by both formal means and by way of clinical impression. The aim of this audit it to assess whether patients prescribed antipsychotics have regular monitoring of treatment response and side effects.
12. Auditing the anticholinergic burden in patients with a diagnosis of a learning disability in an inpatient setting (Hicks M et al): The aim of this project is to complete a baseline audit to examine the effects and recording of anticholinergic burden in in-patient LD patients in Norfolk.
13. Bipolar in learning disability (Brahmana M et al): There are very limited studies that have explored treatments and treatment responses specifically in people with intellectual disability and a bipolar illness. This has meant that treatment guidelines in general rely on extrapolating findings from the general adult population. There is scope for audits, service evaluations or naturalistic studies that describe the clinical presentation of bipolar disorder in people with intellectual disability, the treatment strategies that are adopted and treatment outcomes. This project involves a baseline audit and service evaluation of people with an intellectual disability treated for a bipolar disorder. As there were no audit standards for this group of patients, a preliminary list of 8 audit standards were identified by consensus following three focus group discussions that involved multi-disciplinary health and social care professionals.
14. Personality disorder in learning disability (Amiola A et al): The diagnosis and management of personality disorders in people with intellectual disability is complex. Our aim in this audit is to describe the sociodemographic, clinical and treatment variables in a community sample of people with intellectual disabilities and personality disorders.