Written evidence submitted by Dementia UK (FGP0288)

 

We are Dementia UK – the specialist dementia nurse charity.

 

Dementia is a huge and growing health crisis. There is no cure for dementia. But there is care. And care can change lives.

 

That’s why Dementia UK is here. Our nurses, called Admiral Nurses, who we continually support and develop, provide life-changing care for families

affected by all forms of dementia – including Alzheimer’s disease. For families affected by dementia, they can be a lifeline.

 

What is an Admiral Nurse?  

 

As dementia specialists, Admiral Nurses help families manage complex needs – considering the person living with dementia and the people around them.

 

Admiral Nurses help people living with dementia stay independent for longer – and support the people caring for them. This takes the pressure off the NHS and social care services. Admiral Nurses also provide these services with specialist advice and best practice guidance. 

 

We currently have over 300 Admiral Nurses in NHS hospitals, GP practices and local community services. But by 2025, the number of people with dementia in the UK is projected to exceed one million. We need to drastically increase the number of Admiral Nurses to meet this demand, to support every family needing a specialist dementia nurse. 

 

Dementia UK’s submission

 

Dementia UK is submitting evidence because of our clinical experience supporting families affected by dementia. This includes supporting families in primary care settings through specialist dementia Admiral Nurse services. Family carers and people with dementia also contact our Admiral Nurse Dementia Helpline to discuss their concerns. Our data shows that access to GPs has remained a constant concern throughout the pandemic.

 

What are the main barriers to accessing general practice?

 

People affected by dementia and their families want to experience inclusion, feel heard, and have ease of access to general practice. However, they can face challenges. These include:

 

Trying to make an appointment

 

People contacting our Admiral Nurse Dementia Helpline highlight difficulty accessing GP appointments. People affected by dementia and their family carers have expressed concerns about the difficulty in speaking to a receptionist, either on the phone or in person, due to increased demand. People with dementia and their family carers, particularly if they are older or have limited digital access, can struggle to complete online forms without support.

 

Family carers who contact our Admiral Nurse Dementia Helpline also highlight the general lack of appointments available on the day – particularly if they require face-to-face appointments.

 

Accessing appointments

 

Trying to get a diagnosis of dementia is one of the main reasons for people getting in touch with our Admiral Nurse Dementia Helpline[1]. Getting a dementia diagnosis should be assessed in a face-to-face appointment. Limited availability of appointments can make it more challenging for family carers who are trying to encourage a person who may be reluctant to visit a GP with any concerns/ symptoms that could be dementia related.

 

Dementia can be a complex long-term condition and people with dementia may have multiple co-morbidities. Limited availability of face-to-face appointments and short appointment slots to discuss just one concern can mean not enough time to address the person’s overall health needs. This can lead to families needing to make multiple appointments to address all concerns, which can be time-consuming for both the families and staff at GP practices. In our Facing it alone (2020) research, 74% of GP respondents also highlighted that ‘more time in appointments’ would help better support people affected by dementia.[2]

 

Dementia is a condition that impacts on the whole family. Barriers to accessing GP practices and short time limits on appointments can mean that carers and the person with dementia are unable to have their needs addressed together in totality of their bio psychosocial concerns.

 

How these issues can be tackled

 

Ask patients for their preferred method for contacting their GP practice. Provide patients and their families with options and support with how to contact their GP practice and make appointments that best meet their needs.

 

Encouraging more flexible appointments – for example, ensuring longer appointment slots where possible to discuss multiple concerns, combine time slots so the person with dementia and family carer have longer to discuss and address both patient and carer needs or concerns.

 

Ensure there is a clinical point of contact for those with vulnerabilities. For example, having an accessible dementia specialist, such as an Admiral Nurse, aligned to a GP who can provide person-centred care and co-ordination to reduce fragmentation, connect services and reduce pressure on GPs.

 

The Admiral Nursing model for primary care enables the patient and their families to have an ongoing planned and stepped approach to their dementia care. This is achieved by the dementia specialist Admiral Nurse working at tier three with other specialist health professionals at high level complexity. This care can then include collaboration, or be stepped down to professionals at tier two to oversee and maintain health and social care promotion along with tier one services who provide advisory, peer to peer support, and social inclusion opportunities. 

 

Dementia UK is committed to increasing the number of Admiral Nurses working within Primary Care. Earlier in 2021, we announced new investment funding of just over £1 million to support setting up these new specialist roles[3].

 

While Dementia UK is in a position to invest in developing more specialist dementia Admiral Nurse roles in primary care, we also recommend that there is increased flexibility in assigning allocated funds such as the Additional Roles Reimbursement Scheme (ARRS) funding that can help support and ensure the sustainability of this specialist role within primary care.

 

To what extent does the Government and NHS England’s plan for improving access for patients and supporting general practice address these barriers?

 

Dementia UK supports the focus to increase and optimise capacity within primary care as this can help provide a more flexible personalised approach to patient consultations.

 

We are also supportive of the drive to provide same day access to primary care but we recommend that support is still needed for older analogue booking systems for patients and their carers who may struggle with newer digital technology.

 

We support the commitment to increase the number of GPs, nurses and administrative staff. This can help reduce pressures on the current workforce and help meet growing demands. However, the structure of the workforce needs to address the particular demands of the local population. For example, how can the primary care workforce of the future meet the needs of an ageing population with increased risk of developing conditions such as dementia, and, what specialist support will be available to support the particular complex needs of a person living with young onset dementia[4] (under the age of 65 years) and their families?

 

We also support the focus on triaging patients – but this does require understanding and knowledge of dementia care. This includes a clear and timely stepped pathway of dementia care to support ongoing needs - and when cases need escalation due to complex symptoms and increased risks such as carer crisis/breakdown.

 

What are the impacts when patients are unable to access general practice using their preferred method?

 

(77%) of family respondents in our Facing it alone research (2020) reported dissatisfaction to an extent or with some aspect of the support received from GPs and other services[5].

 

Family carers may be trying to access general practice when they are already feeling exhausted and vulnerable. Struggling to access general practice and the support that they require, can lead to increased frustration, anxiety and agitation for families living with dementia. Carers may feel unheard/ misinterpreted and their needs, and those of the person with dementia, could remain unmet.

 

The impact of which can be dissatisfaction, frustration and a poor experience of care - potentially leading to an increase in complaints.  A further consequence of poor care is the moral injury amongst GPs and other healthcare professionals who report that severe time and capacity issues reduce their ability to provide the support that is needed for families living with dementia.

 

Accessing general practice to try get a diagnosis can be a particular concern for families. Without a diagnosis, or a long delay in getting a diagnosis, or needing to attend multiple appointments to try to get a diagnosis, can mean that the person with dementia and their family carers do not have access to the right post-diagnostic support to enable them to effectively manage the condition. This can lead to a deterioration in physical health and emotional wellbeing of both the person and family carer. 

 

Getting a diagnosis was like wading through treacle. I attended surgery with my mum on several occasions in the 18 months prior to formal diagnosis, flagging up that there was a history of dementia in the family. Mum did have mild depression and anxiety and it was always put down to this, rather than further investigation. At that stage, I felt the GP simply wasn’t listening to my concerns.” (Family carer)[6]

 

People affected by dementia and their families require access to better follow-up appointments, including annual reviews. Without regular opportunities to review health and discuss care needs, the health of people affected by dementia and their families can deteriorate which could then require more complex clinical interventions, including increased demand for hospital and out of hours care.

 

Difficulty accessing general practice, and poor follow up, can leave people avoiding trying to make GP appointments and putting off contacting the practice until there are multiple concerns that escalate, or a crisis occurs. This increases the risk of both the person with dementia and family carer experiencing deterioration, with increasing health and social care needs, and potentially reaching crisis point.

The risks of a crisis can mean that the carer reaches breaking point and is no longer able to cope. This can potentially lead to safeguarding issues, including abuse and neglect. As well as increasing the chances of unplanned hospital attendances and need for 24-hour care.

 

What role does having a named GP—and being able to see that GP—play in providing patients with the continuity of care they need?

 

A named GP helps provide a more person-centred care approach and a therapeutic trusting relationship. This can help reduce anxiety, for the family carer as well as the person with dementia, who may otherwise be reluctant to attend appointments.

 

A practitioner who knows the family well can build relationships; reassuring them and helping ensure that they are able to access the care they need when they need it.

 

Continuity of care can also reduce the risk of error and missed information. Benefits also include better case co-ordination to reduce fragmentation and the connection of all services involved to help support complex dementia care.

 

What are the main challenges facing general practice in the next five years?

 

People affected by dementia have historically ‘fallen between the health and social care gap’ and there needs to be meaningful integration, not just between health and social care, but also between health services, eg, between acute and community care services, to ensure better shared information and care co-ordination.

 

Other challenges relating to dementia care include:

 

How does regional variation shape the challenges facing general practice in different part of England, including rural areas?

 

Understanding and meeting local population needs remains a key issue, including how this can vary regionally for example, meeting the needs of diverse and harder to reach communities and prioritising health inequalities.

 

There are particular challenges, such as transport links, facing people living in rural communities, including older people or those with long term conditions such as dementia. This can be an issue for people requiring face-to-face appointments but who need enough notice of appointments to arrange the necessary transport. This suggests the need for greater availability of home visits. A multidisciplinary team approach could support this, where other clinical staff may be better placed to make home visits and free up GP time.

 

The ‘postcode lottery’ of available support and services needs to be addressed, with some people being unable to access the services, or quality of services, they need because of where they live. 53% of GP respondents in our Facing it alone research reported a ‘lack of local support services for people affected by dementia’[7]. There is also the need to ensure greater co-ordinated care and support across borders, eg, for someone registered with a GP practice in one locality but care covered by another area.

 

What part should general practice play in the prevention agenda

 

40% of dementias are preventable[8] and general practice has a vital role in the prevention agenda – including sharing information and advice to support a healthy lifestyle and promoting and ensuring accessibility of regular check-ups and reviews to monitor health and pick up any health concerns at an early stage.

 

This can be best supported by an integrated multidisciplinary approach, allowing patients to be seen by the right professional at the right time and in the right place.

 

What can be done to reduce bureaucracy and burn out, and improve morale in general practice

 

82% of all GP respondents in our Facing it alone report[9] highlighted ‘time and capacity pressures’ as a key challenge in supporting people affected by dementia. Introducing GP-aligned specialist dementia Admiral Nurse services across all 42 ICSs can better support both patients with dementia and GPs.

 

Other recommendations include:

 

 

How can the current model of general practice be improved to make it more sustainable in the long term?

 

In terms of better meeting the needs of a patient with dementia and their carers, and to reduce pressure on GPs, primary care needs to be equipped with a cost effective three tiered, wrap around dementia care service. This will enable families to access with ease, the right care at the right time by the right professional.

 

The Admiral Nursing model for primary care provides this stepped approach;

 

Do the current contracting and payment systems in general practice encourage proactive, personalised, coordinated and integrated care?

 

On the whole, there is financial incentive to improve this, however, this is complex and requires specialist knowledge and support when addressing dementia, including the needs of families. 

 

The new Contract Network DES supports the incentive to encourage a proactive, personalised, coordinated and integrated care approach. However, this can only realistically be delivered by having the right services embedded with the right level of knowledge to ensure the service is effective and patient needs are met. There is always a concern that quantity trumps quality’ in delivering patient care when boxes need to be ticked.

 

 

To what extent has general practice been able to work in effective partnerships with other professions within primary care and beyond to free more GP time for patient care?

 

We wish to highlight effective partnerships with specialist dementia Admiral Nurses working within primary care and how they help free up more GP time by;

 

 

Dementia UK’s strategic priority focuses on increasing the number of Admiral Nurses working within primary care.

 

Dec 2021


[1] Admiral Nurse Dementia Helpline annual evaluation report (2020) available at: https://www.dementiauk.org/wp-content/uploads/2021/09/Admiral-Nurse-Dementia-Helpline-annual-report-2020.pdf

[2] Our report, Facing it alone: experiences of dementia support (2020)  available at: https://www.dementiauk.org/wp-content/uploads/2020/11/Facing-It-Alone.pdf (accessed 01/12/2021)

[3] For more information about our announcement please visit: https://www.dementiauk.org/primary-care-investment/ (accessed 30/11/2021)

[4] There are around 42,3000 people with a diagnosis of young onset dementia but this figure is likely to be much higher due to misdiagnosis.

[5] Our report, Facing it alone: experiences of dementia support (2020)  available at: https://www.dementiauk.org/wp-content/uploads/2020/11/Facing-It-Alone.pdf (accessed 01/12/2021)

[6] Family carer quote taken from Dementia UK’s Facing it alone report (2020) accessible via this link: https://www.dementiauk.org/wp-content/uploads/2020/11/Facing-It-Alone.pdf (accessed 30/11/2021)

[7] Our report, Facing it alone: experiences of dementia support (2020)  available at: https://www.dementiauk.org/wp-content/uploads/2020/11/Facing-It-Alone.pdf (accessed 01/12/2021)

[8] Livingston, G, Huntley, J, Sommerlad, A, et al, Dementia prevention, intervention, and care: 2020 report of the Lancet Commission, published July 2020

[9]  Our report, Facing it alone: experiences of dementia support (2020)  available at: https://www.dementiauk.org/wp-content/uploads/2020/11/Facing-It-Alone.pdf (accessed 01/12/2021)