People with a learning disability (LD) are people first and therefore should be included with all health decisions. It is for this reason that all our appointment letters meet their communication needs and that their nearest and dearest are supported throughout admissions also.
Having a realisation that Primary care registers have more people with LD known to them when compared with the registers that the acute trust hold, reasonable adjustments can be few and far between. However, our trust has responded to this challenge and started a pilot share scheme with the Local CCG’s. These will allow us to increase the amount of flags on our system.
The importance of these flags are paramount as we have linked them to more accessible appointment letters, phone calls to allow the trust to ring ahead to help plan appointments, implement the learning disability care pathway more readily, support carers by giving prior knowledge of the carers charter and our pledge to them. More importantly it will bridge the gap that transistions from Childrens to adult services often face and/or when approaching end of life right or simply allow more support for people with LD when having children of their own!
As a trust we were having approximately 50 ‘Did not attend’ for outpatient appointments every month, we were unaware when people with LD were attending and therefore reasonable adjustments could not be planned. Staff were unaware of the needs of people with LD as mandatory training was a simple online workbook (and as such people with LD are now included on mandatory training), people were being missed throughout transitions and the deteriorating patient was often missed.
Mothers and Fathers were unable to understand the maternity process and those nearest to patient were often not supported throughout admissions. Ultimately the ambition of the project was to increase the amount of inclusivity people with LD should receive, around their own healthcare needs with the necessary reasonable adjustments.
As a trust we aimed to have an awareness of a person’s level of LD prior to admission supported by the CCG’s own flagging system for the annual health checks and that with this knowledge we would be able to instil several mechanisms to give a whole system approach to patient involvement. Information governance would not allow instant sharing of information and therefore, strict guidelines around consent and Best Interests needed to be resolved.
The awareness of the needs of people with LD became twofold. There was a reduction in none attendance rates, improved patient experience, carers felt valued, patients could understand their own appointments letters, telephone calls prior to appointments have allowed for reasonable adjustments to be made, and more people are receiving an equitable service. People are also returning home as a complete family unit after having their babies.
Families of transitioning patients were informed early around the Mental Capacity Act and were able to make contact with the wards their relative would potentially be an inpatient on once in adult services. The main difficulties were how to share the information GP’s held with the acute hospital trust in line with IG. A consent letter has been designed and is being distributed with 3 GP practices (initially) to be discussed during their annual health review.
This consent letter will then be returned to the trust to allow the flagging to be added. For patients where capacity is queried the offer of applying the flag under best interests will be discussed. As the flag reduces risk, supports inclusivity and the implementation of specific pathways this sharing of information is paramount.
Who have you worked with to enable this? The trust has recently involved NHS improvement within the evolvement of the LD service provision. NHSi commissioned patients by experience to quality check and therefore assure the current provision is achieving what it set out to do.
This saw several ex and current patients being interviewed, relatives and other service providers discussing their experiences, as well as internal professionals discussing their involvement and current knowledge around the needs of people with LD. There was also a mock admission so they could see the processors in place to support people at the point of entering our Emergency department right through to discharge.
The Trust has agreed to NHSi to use this evidence on the internet, all current practices within the trust has been shared across the regions acute LD nurse meetings including thanking individual patients for their participation with small celebration events.
The value of this project is not of monetary gain, although the reduction in none attendance rate can be seen in this way. The value simply lies with the realisation that people with LD can be supported to be full members of society to make their own decisions about appointments, about what should be delivered on the training of healthcare professionals, about sharing their information with relevant NHS providers for the purpose of allowing reasonable adjustments to be applied more readily. This passionate way of working with others has seen many professionals within the trust wanting to do more and develop a champion network and to continue to make improvements to their own work areas.
The stakeholders of this project truth be told is all of Sherwood Forest staff with particular attention to Ann Gray and her Patient services, Mandy Toplis and the outpatient team, Helena Clements and the Paediatricians, Justin Wyatt and his excelling ward, Lisa Butler and her team of Midwives, Suzanne Banks as chief nurse and LD lead driving the service from above, Tina Hamas-Tylor as my Manager who has allowed me to be as innovative and a well driven learning Disability nurse… Not to mention the external experts by experience who ratify all of my ideas; Ashfield Day services, and all the patients and carers who have given their valued input in change and inclusion.