Children and adults with profound and multiple learning disabilities have a combination of disabilities. They all have severe learning disabilities and the majority of people with PMLD also have severe physical disabilities and complex health needs. Some children and adults with PMLD will also have sensory impairments, and or mental health difficulties.
This means that their intellectual and social functioning will be extremely delayed. Individuals with PMLD will have a limited ability to engage verbally or use other formal methods of communication but will respond to others and their environment using voice, touch, behaviour and physical symptoms. Therefore each individual’s communication is unique and will be understood by those who know that individual well.
The combination of disabilities and their severity will differ from one individual to another and it is therefore important that each person and their needs are seen as unique and are responded to focussing on what matters to that individual.
It is very difficult to recognise if a person with PMLD also has a mental health condition. Very often that person will indicate through their behaviour or emotions that they are unhappy, anxious or in pain. Because understanding their communication is based on interpreting their emotions or behaviour the first line of response is to make sure that there is no physical reason causing the change of emotion or behaviour – for example tooth ache, impacted bowel, change in medication.
Based on work undertaken by the PMLD special interest group in Hull there are approximately 80 adults in Hull with PMLD. Although a small group, because of the complexity of their needs they are likely to extensively use health services both in the community and in hospital.
Children and adults with PMLD will use the same services as other disabled people – so information on housing, health services, education and adult social care can be found on this website
The Local offer website has information on services for children and young people with special educational needs ages 0 to 25.
The options in the section on housing cover the whole population e.g. older people, physically disabled people etc as well as people with PMLD so you will need to check whether a service listed in this section is appropriate for a person with PMLD.
Help at home
Our help at home section has lots of support options that may help support the person you care for stay living in their community.
Equipment and services
The equipment and services section has places for you to purchase products and services online, over the telephone or in perosn
Health Services in Hull
The link to Health services will take you to a NHS website on which you can look up information on different conditions. Children with PMLD are likely to be seen by a Paediatrician. Adults with PMLD are likely to have a GP, a learning disability community nurse as well as being seen by a number of hospital consultants. One of the main issues for carers is co-ordinating the health care of the person with PMLD.
Continuing Health Care
Most children and adults with PMLD will have complex health needs or develop complex needs as they go through life. For example – being fed via a gastrostomy; develop scoliosis of the spine; epilepsy – difficult to control with medication etc. This may mean that a person with PMLD is eligible for funding from Continuing Health Care rather than Adult Social Care. There is information for families explaining how eligibility for this funding is assessed and agreed.
Supporting someone with PMLD
Due to the severity of a person’s learning disabilities, many decisions small and large will need to be made by others. For children with PMLD the parents or people with ‘parental responsibility’ will make those decisions. For an adult with PMLD, decisions are made in accordance with the Mental Capacity Act (2005) – using the ‘best interest’ process.
Assessment of Care Needs
If you are caring for someone with PMLD who requires an assessment of care needs then you should contact the Hull City Council See and Solve team. The See and Solve team will take the person you care for and your details at which point they will pass your information onto one of our care co-ordinators, who will be able to support you with an assessment of care needs.
If you care for someone with PMLD you will also be entitled to complete a carer’s assessment.
You can contact the See and Solve team via-
- email: See&Solve@hullcc.gov.uk
- telephone: 01482 300 300
Despite the severity and complexity of a person’s needs, children and adults with PMLD can enjoy their lives. They will live in a very ‘sensory’ world and will relate to others and their environment in a sensory way.
Caring for Someone with PMLD
If you care for someone with PMLD then you are entitled to various benefits and support services both locally and nationally. These could include, -
- Advice and support
- State Benefits
- Support groups
- Assessment of carer’s needs
As a carer you can choose which services you wish to access depending on your circumstances. You may feel it beneficial to view our carers information using the link below.
End of life
Approaching end of life is difficult for all families but can be even more difficult when someone with PMLD is involved as they often die at a much younger age. Carers should expect the same services and support that is given to any adult approaching the end of their life. Carers should talk to the community nurse for learning disabilities about support when dealing with issues around end of life.
Our end of life page has lots of advice and information along with support services available locally.