Profound and multiple learning disabilities
People with profound and multiple learning disabilities have a profound learning disability and additional health needs that require high levels of support from others. Many are life-long wheelchair users. Many have sensory impairments with either vision or hearing affected. Their physical healthcare needs are complex.
Families and carers routinely carry out intensive 24-hour care to provide the person with support and a good quality of life.
Top tips for supporting and meeting the needs of people with profound and multiple learning disabilities.
Our care pathway
The community adult learning disabilities team works with people with profound and multiple learning disabilities and their support network to find out more about their health needs and how these needs can best be met.
Once a referral has been made to the service, the person can expect to see a:
- learning disability nurse
- physiotherapist
- speech and language therapist
- occupational therapist
- support worker
- dietitian
Animation created by Born at the Right Time and copyright of Cornwall Partnership NHS Foundation Trust
Support we provide
- Dietician, nutrition status assessment:
- feeding regime
- nutritional plan
- Nursing, holistic health assessment:
- health action plan
- hospital passport
- pain monitoring
- Occupational therapy, meaningful activity and sensory assessment:
- activity support plan
- sensory profile
- Physiotherapy, postural and mobility assessment:
- hydro and rebound
- postural management plan
- Psychology:
- health monitoring
- behaviours that are challenging
- Specialist epilepsy service:
- SUDEP checklist
- epilepsy guidelines
- Speech and language therapy, communication and eating and drinking assessment:
Helping people with profound and multiple learning disabilities
Whilst the team is working with a person, they will have a named care co-ordinator. All professionals working with the person will be able to discuss all of their health needs, and where needed, make appropriate referrals to others in the team or other services.
There are some health needs that require more specific advice and treatment than we can offer.
Our service can co-ordinate this by working with other services including:
- your GP
- district nurses
- respiratory care
- acute care at home
- primary care liaison service
- specialist dentist
- bladder and bowel service
- hospitals
- acute liaison teams
- specialist epilepsy service
- specialist neurology teams
- community independence occupational therapy team within the council
- Cornwall wheelchair service
- palliative care
Whilst any concerns about health needs should always be raised with a person's GP in the first instance, the adult learning disabilities team can be contacted at any time if anything changes or it is felt that a review is needed.
Pledges
We pledge the following to people with profound and multiple learning disabilities and their families and support networks.
- The person can expect to receive assessments and interventions from all professionals in the multi-disciplinary team regarding their specialist health needs (as shown in the pathway).
- The person will have a named care co-ordinator from the team during their care episode.
- We will work with other services to ensure the person is supported by other professionals who have more knowledge in certain areas, such as the wheelchair service or community nurses.
- Even when the person is discharged from the team, we will offer a review of their health needs every 12 months.
- We will be person centred and consider the person's needs and wishes, alongside that of their families and carers.
Reviews
Everyone with profound and multiple learning disabilities who are discharged from the team will be reviewed a year after they are closed. If they are not referred back into the team during that time.
Our pathway was developed following national recommendations. Find out more about how the multi-disciplinary care pathway was developed.
Research papers
If you would like to read more about what is recommended for people with PMLD:
Available at:
- Supporting people with profound and multiple learning disabilities. Doukas T, Fergusson A, Fullerton M et al. (2017) Core and Essential Service Standards. Download the report.
- Confidential inquiry into premature deaths of people with learning disabilities. Heslop P, Blair P, Fleming P et al. (2013) Norah Fry Research Centre, Bristol.
- Raising our sights: Services for adults with profound intellectual and multiple disabilities. Mansell J (2010). Tizard Centre, Kent.
- Supporting and meeting the needs of people with profound and multiple learning disabilities top tips. NHS England, London (2013).
- Learning disabilities mortality review (LeDeR) programme. University of Bristol 2017 annual report, December 2017. University of Bristol, Norah Fry Centre for Disability Studies.
- Learning disabilities mortality review (LeDeR) programme. University of Bristol 2018 annual report. University of Bristol, Norah Fry Centre for Disability Studies.
- Learning disabilities mortality review (LeDeR) programme. University of Bristol 2019 annual report. University of Bristol, Norah Fry Centre for Disability Studies.
