Hft is a national charity that supports people with learning disabilities. We proactively source information and training to ensure quality support for people as they age. Our ‘Valuing Ageing Network’ shares good practice and finds peer support for specific issues, and has become involved in national research projects on dementia and ageing.

10 February 2016
Care, Communication

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

Hft is a national organisation within the voluntary sector which supports people with learning disabilities.  Hft has been operating for 50 years and have many people who have aged within our services.  As people have aged we have been proactive in sourcing information and training to ensure that we are supporting people appropriately to give them the best possible person centred support.  We ensure that the individual and their family/carers are fully involved in planning how an individual is supported; these plans are reviewed at appropriate intervals and in turn influence changes in support.  All services liaise with their local health providers and funders to gain the appropriate support to ensure that, wherever possible, people remain and are supported in their own homes. 

Hft have also been proactive in gaining appropriate training for staff.  We have a 'Valuing Ageing Network' which all services within Hft access to share good practice and find peer support with specific issues as well as becoming involved in research, national dementia and ageing projects.   For many years Hft have championed the use of 'life story' work which enables those supporting a person to understand and 'know' them as an individual rather than an illness.  In the same way people are supported with the help of their loved ones to develop an 'end of life plan'.

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

There are different challenges in different areas of the country and according to different funding authorities.  Some locations find the process of accessing Continuing Heath Care funding very difficult and lengthy and in two cases in separate parts of the country the individuals died before the funding was granted.  Some Local Authorities would rather fund the individual in an elderly persons home rather than continuing to support them in their own home as the former is a cheaper option.  Another area of concern is that some areas are finding that Community Learning Disability Teams are refusing to prescribe medication at an early stage and waiting until the individual will not gain the most benefit from it.  General Practitioners do not always have a knowledge of Learning Disabilities therefore supporting individuals to obtain the appropriate medical support is difficult as these barriers have to be overcome before essential treatment is provided.

2. Actions

  • To Improve Communication with GPs

    To improve communication with general practitioners to raise their awareness of learning disabilities in order to provide better services to those on the dementia pathway.


    2013 - First Quarter Update

    Progress recorded against this action at the last submission continues, further progress is as follows:-

    Hft Kingston – are joining up with the local Service User parliament to look at heath on a wider spectrum to ensure effective monitoring, screening and guidance is in place. Looking at introducing keyworking for people who only have minimal input from services. This is starting in the new year and will include aging and dementia work.

    Hft South Oxfordshire – we continue to have good relationships with the local GP practices, and this is enhanced by the work done by the local LDT, which has included a health check proforma for staff to use when supporting people with GP appointments and annuals health checks. The Area Manager is also a provider representative on the local LD Partnership Board, and as such has been involved in discussions about how they may influence the Health & Wellbeing Boards. Oxfordshire has already published it’s first Joint Health & Wellbeing Strategy.

    2012 - First Quarter Update

    Our North Oxfordshire services have been working closely with their GP’s to ensure that annual health checks follow the Cardiff Health Check’ which is the one recommended so that GP’s cover all areas that need to be considered for people with LD. This service is also working closely with local CLDT psychologist and team who are supporting them with baseline assessments where it is suspected that there is the possibility that a person with Down Syndrome has dementia. They are then supporting the service with follow up assessments in order to map changes.

    All Hft services work closely with their local CLDT’s to ensure base line assessments are in place for all people with Downs Syndrome and these are monitored and updated on a regular basis.

    Hft Kingston have introduced ‘Health Action Passports’ to use with GP’s and are booking longer appointments to give time for meaningful discussion and help with communication issues.

    Hft Anglian are currently working with Hertfordshire Social Services to ensure that all people with a learning disability over 40 years of age has a baseline dementia assessment in place.

    Hft Gloucestershire have received learning points following a report from the Confidential Inquiry into premature deaths of people with learning disabilities. One action they have put in place to improve GP awareness of LD services is by implementing 6 monthly meetings with the GP practice to ensure better communication. Also that the GP should be actively involved in Mental Capacity assessments rather than just forwarding to CLDT as this could improve GP knowledge when they are more directly involved and take the role as the decision maker.

    At Hft Arden Vale periodic meetings are held with the GP services to see how we can assist and improve our communications for the individuals that are registered, while working closely with the Health Facilitators in locations to assist individuals to have regular health care checks. Sharing with GP recorded observations for a person so we can assist where a person may need to be assessed for dementia screening.

    Hft Leeds are sharing their recorded observations for a person so they can assist where a person may need to be assessed for dementia screening.

    Hft Anglian are in contact with Affinity Trust who have a dementia/learning disability service. The Area Manager is meeting with them to possibly look at shared training and learning.

    Hft Wirral share recorded observations for a people so they can assist where a person may need to be assessed for dementia screening. This is specifically with the CPN’s. 

    Hft Sheffield have been involved through partnership boards with improving the service GP’s offer to people with Learning Disability generally.

  • To Share Good Practice

    To share our good practice with other providers.


    2013 - First Quarter Update

    Hft Cornwall – One person has now moved to a more permanent placement outside of Hft. This was due to the ageing parent and Chy Keres being a Short Break service only. However we still make links with the dementia specialist.  A change of Management so unsure to date how this is going.

    Hft Bradford – share  skills and knowledge with other organisations through the BALDAD (Bradford Ageing Learning Disability and Dementia),

    Hft South Oxfordshire – we continue to be members of local provider networks and the local Palliative Care network, and continue to share experiences with other providers, and have a positive reputation within the county for supporting people who are ageing and have Dementia.

    2012 - First Quarter Update

    Hft Short Breaks Service in Cornwall is working with two people with Dementia and working closely in cooperation with other providers who support the individuals to ensure a continuity of monitoring and support of their condition. For one of the individuals there is not always an up to date care plan available which is an area we intend to improve.

    A Service Manager in Hft Cornwall has been was approached by Social Services Commissioning Team to become a ‘mentor’ to other providers in order to share skills, knowledge and good practice in setting up individualised service which can include those for people with LD and dementia. This ‘help’ service will also include information meetings run by the manager.

    Hft Leeds is is part of a local area learning disability forum where good practice is shared.

    Hft continue to share information and good practice throughout the whole organisation via the Valuing Ageing Network.

    Hft Wirral are part of a local care consortium who share good practice.

    Hft Sheffield do this through various forums including the Complex Needs Forum which the Area Manager attends and includes discussions re dementia.

  • To gain a quality mark for our services.

    To gain a quality mark for our services.


    2013 - First Quarter Update

    Hft Sheffield & Derbyshire – have achieved the Bronze dignity and respect standard at Pine Bank. This was awarded by Derbyshire County Council as part of their dignity campaign. At present this is the highest award but they are planning on introducing a Silver award next year.

    2012 - First Quarter Update

    Hft Fallstaff House in Bidford on Avon, Warwickshire have been awarded the Linda McEnhill award presented through the ‘Palliative Care For People With Learning Disabilities Network’. The winning Category for 2011 was “Outstanding care of an individual” http://www.pcpld.org/lindamcenhill-award/2011-winner/ the comments of the awarding board of judges was ‘….stood out for the care they gave to XX, one of their residents who developed dementia. The judges were impressed by the way the team did their utmost to keep XX’s best interest (rather than their own) at the heart of everything they did. This was not always easy. It involved engagement with a staggering number of outside agencies and professionals (including the funding authority) and with XX’s family. The manager and the support team were staunch advocates for XX, and this meant that he was able to be in the place where he felt most comfortable.  They showed flexibility, creativity and a ‘can-do’ attitude. One of the judges commented: ‘If I was looking for a case study to use when teaching professionals what is involved in supporting someone really well, this would be it.’.

    Hft Derbyshire are currently working with Derbyshire to gain the dignity and respect standard award as part of their dignity campaign.

  • Palliative care training

    To improve access to palliative care training to ensure better ‘End Of Life Planning’.

    End of Life Plans are being completed by indivuals on a 1-1 basis

    Trained Trainers are currently being trained 

    Being implemented

    2013 - First Quarter Update

    Following an investigation into a recent death at one of our services it has been recommended that the service request a review of the end of life care training provided by the local CLDT be reviewed to highlight the importance of monitoring for dysphagia. 

    Hft South Oxfordshire – being part of the local Palliative Care Network has helped us access training provided by the national network, as well as workshops held locally.

  • Training Staff

    Continue to develop our staff in supporting people with learning disabilities and dementia.

    2015: Trained trainers are in place. Sessions are being planned throughout the organisation.

    Being implemented

    2013 - First Quarter Update

    Progress recorded against this action at the last submission continues, further progress is as follows:-

    Hft Cornwall – have had development support for staff in some of our services relevant to names supported individuals.

    Hft Devon – provide staff with training around Dementia. Staff are trained to spot the early signs and make referrals for assessments.

    Hft Kingston – Staff have received training in Dementia awareness as well as loss and bereavement training.

    Staff have attended Local authority training to maintain team awareness in relation to Dementia awareness. This is also linked to a recent individual’s needs.

    Hft Gloucestershire – The Area Manager has completed the 4 day dementia leadership course. 4 senior staff have are undertaking the dementia link worker course in February 2013 delayed due to large take up of the training. Two Service managers are undertaking training via the CLDT team to enable bereavement support for staff teams. A supported person has been invited to take part in some new research at the University of Cambridge.  The research is in ‘Energy and memory in Down’s syndrome’. www.dementiainds.com/energy .

    Hft Bradford – Staff Team at The Grove, completed x1 day dementia awareness, also x2 senior staff to complete Principles of Dementia – level 2, and  assistant manager to complete a workshop for people leading and supporting a workforce who work with people with dementia.

    Hft South Oxfordshire – are continuing to access training both locally and nationally in order to be able to support an ageing population. Some examples of this are Dementia awareness, continence advice, SALT workshops on difficulties with eating and drinking, end of life care, fall’s workshops, etc.