NHS ENGLAND TRANSFORMATION FRAMEWORK THE WELL PATHWAY FOR DEMENTIA

Transcription

1 NHS ENGLAND TRANSFORMATION FRAMEWORK THE WELL PATHWAY FOR DEMENTIA CONSULTATION FEEDBACK ACROSS GREATER MANCHESTER, LANCASHIRE AND SOUTH CUMBRIA STRATEGIC CLINICAL NETWORKS Author: Maureen Jolayemi, Quality Improvement Senior Project Manager Page 1 of 5

2 Greater Manchester, Lancashire and South Cumbria Strategic Clinical Networks (GMLSC SCNs) are focused on engaging stakeholders to review the five themes (as identified within the NHS England Framework - Well pathway for Dementia) below: Preventing Well Diagnosing Well Living Well Supported Well Dying Well The Proforma was sent to 370 stakeholders across the footprint. The results are summarized below. Page 2 of 5

3 Section 1: Response rate: 8% (N = 30 completed proformas received). Stakeholder groups Responses received Patient,Carer and Public Engagement group 4 Other Stakeholder Groups 11 Clinical commissioning group Leads 4 Palliative & End of Life care Facilitators 9 Wider Dementia dsitribution group 2 Question 1 Question 2 Page 3 of 5

4 Section 2 Feedback responses/narrative Summary Preventing well I don t understand preventing well More information needs to be available regarding mild dementia and particularly delirium and its prevention Document mentions prevention how can dementia be prevented? preventing well doesn t sound very clear. Perhaps consider The Living Well Dementia Pathway and using the themes preventing dementia, diagnosing dementia, living with dementia, supporting people with dementia and dying with dementia? Diagnosing well Early correct diagnosis Continuity of support from diagnosis through to when life becomes more difficult due to the problems brought by dementia Increase accessibility of memory assessment services for diagnostic support/ increase in resources. The care plan is only noted to be reviewed after the first year which is a positive step. Would suggest at Diagnosing well stage that Advance Care Planning is added Living well The entire undertaking is not entirely a health and social care responsibility and communication with other environmental stakeholders such as commerce and transport will need development. They potentially provide the underpinnings to the living well theme. Improved access to assessment for and provision of assistive technology. Increased awareness of safe communities/ marketing of dementia friendly communities There is voluntary sector support but limited health and social care input to live well with it. There is no particular reference to Advance Care Planning which is essential for long term planning. Important to get the message across regarding early interface between dementia and palliative care services. Supported well Supported Well may be better phrased Supporting Well Consideration on the best way to support and engage people from BAME communities is needed Although there is information and support for people with dementia and their carers it can sometimes be difficult to access this and navigate systems e.g. Council/NHS More responsive and better supported community services Dying well Need to be mindful of language, as in EOLC there is a shift away from Pathway. Danger that the dying well section may suffer the same fate as the Liverpool Care Pathway excellent when in carefully-trained hands in a well-staffed situation, but not when applied in situations, eg, care homes, by less experienced staff with poor, or no, access to support and advice. Several different references to care planning, anticipatory planning and advance care planning. Quite confusing so important that there is clarity on the different terms etc. Re dying well to emphasise the significance of a holistic care approach and symptom management, which is not just pain Opportunity to promote the north west End of life care model, and maybe have best practice included Advance care planning should be mentioned as a standard in dying well. Page 4 of 5

5 General feedback on Framework and pathway Standards The title could be anything, it sounds threatening and scary. Perhaps LIVING WELL WITH DEMENTIA may sound more hopeful and friendly. Who is the target audience for the pathway Document? It would be useful to have a section identifying who can contribute to each of the sections and what key interventions will help. Standard Reads well. Has very clinical focus, hence quite deficit based as opposed to asset based. The difficulty with the framework in the first instance is the NHS bias in the commissioning guidance section. Consider the inclusion of a recovery statement, where the recovery would be recognised as the purpose of the intervention. Pathway and standards do not pick out harder to reach groups such as BAME populations, Learning Disability, Deaf people and Younger people. Need to consider the continuum across the 5 steps of the pathway as a whole process rather than individual steps to provide opportunities for patients and carers to explore future wishes, goals and objectives together at appropriate times There may be duplication or gaps in services and funding streams, this will need to be mapped in each area and we will need to ensure services in place to meet identified gaps in provision. Gap between the pathway theory and actual practice. While it is good to raise aspirations and standards, the end (using the pathway) requires the provision of means (buildings, staff, money). Can this pathway be realistically and consistently implemented nationwide at present? If not, it should be shelved until the infrastructure is in place. The standards does not acknowledge that the care plan developed as part of the well pathway should be person-centred Carers Carer input. Carer assessment and listening and hearing what the carer is really saying. Recognition of a pathway for people with Dementia and their families to support a timely admission and discharge process when faced with Acute hospital Care. Close and supportive links between the EoL Nurse, Palliative Care service, Admiral Nurse and Hospice to enable seamless and meaningful care provision. Close and supportive links between the EoL Nurse, Palliative Care service, Admiral Nurse and Hospice to enable seamless and meaningful care provision. Summary of Other Comments relevant to Pathway/framework What is ADASS, PHE & other ALBS?? Obviously jargon. More jargon in the whole of the Measurement and Transformation...etc section. More explanation of the thinking behind these ambiguous titles would be useful All abbreviations should appear in full in a footnote Signposting can occur accordingly by the pharmacy. Community Pharmacists, once given training, can become part of the integrated team. The Community Pharmacies providing NHS Health checks can outline the increased risk of dementia. Whilst there are strategies to draw on, dementia care is not seen as a speciality it is integrated into everyday practice Education and training to staff, carers and patients should be strengthened. Education and training could be added to standards Preventing Well, Living Well and Dying Well Page 5 of 5