Over 2,000 dementia patients not reviewed by their GP for 15 months

ONE in six dementia patients in Northern Ireland were not reviewed by their GP for over a year, The Detail can reveal.

An analysis of Department of Health data for 2015/16 has shown that more than 2,000 patients diagnosed with dementia did not have a face-to-face medical review by their GP for at least 15 months.

There are 13,600 people in Northern Ireland who currently have a diagnosis of dementia but it is estimated that a further 7,000 people remain undiagnosed and untreated for dementia.

Stormont’s Department of Health said it is not mandatory for GPs to review dementia patients within 15 months but confirmed that GPs receive a government payment under the Quality of Outcomes Framework (QOF) for reviewing between 55%-70% of dementia patients within this timeframe.

In 2015/16 the majority of the 347 GPs in Northern Ireland met the maximum threshold, with just seven GPs falling below 70%.

Despite the high rate, the figures still show that a total of 2,139 patients were not reviewed by their GP in the 15 month period.

However, the Royal College of General Practitioners responded to the findings to say there are many reasons why a patient may not have been reviewed.

The Commissioner for Older People for Northern Ireland Eddie Lynch described the figures as “alarming” and said: “Living with dementia is difficult and often distressing for the person and for their families and friends. It is crucial that any care needs assessed at diagnosis are met in full. Treatment and support for those with dementia must be of the highest standard.

“Whilst the figures provided by The Detail are alarming, care for people with dementia is often assessed and provided by memory clinics and multidisciplinary teams, not solely the GP.

“However, it is important that [Health and Social Care] Trusts look at the reasons why 2,000 patients did not have a face to face medical review by their GP for at least 15 months and consider if they are receiving the appropriate treatment.”

Official figures also reveal that the patient review period is longer in Northern Ireland than elsewhere in the UK.

Under QOF, doctors are required to review dementia patients every 15 months in Northern Ireland, compared to every 12 months in England, Scotland and Wales.

The Stormont Department of Health confirmed to The Detail that the review periods were revised in recent years but a decision was taken not to change the review period here.

The department said: “Originally the review period was 15 months in all countries, in 2013-14 the other UK countries amended the review period to 12 months but in NI we retained the 15 month period. The then Department of Health, Social Services & Public Safety did not propose changes to any review dates within QOF and have retained the original review dates.”

In the Republic of Ireland, there is no dementia register or equivalent data available on the number of people diagnosed.

Current estimates point to around 55,000 people living with dementia in the Republic, with experts now calling for support for new measures to gather information on the prevalence rates, especially since numbers are expected to increase.

DATA DOES NOT PROVIDE FULL PICTURE

Quality of Outcomes Framework (QOF) data is gathered to inform policy and also to assist in the management of serious illnesses.

However, the information on dementia does not provide an age breakdown of individual patients or record how long they have had a diagnosis.

It also does not capture details, such as when a patient with dementia has died, is being treated for another life-threatening illness or where a patient is attending specialist services, such as a memory clinic.

Dr Peter Passmore, Professor of Ageing and Geriatric Medicine at Queen's University Belfast, said the QOF data does not provide the full picture but that the 15 month review figures warrant further investigation.

In some cases, he said, a review may not be required, while in other cases a patient may not attend for review.

“If someone is diagnosed with dementia early there may not be a need to review their care if something has been formally set up for them or they are stable,” he told The Detail.

“There may not be any problems in that timeframe and no need for a review.

“It may not be an issue if the patient is at the early stage of dementia but it is more of an issue at the later and more advanced stages of dementia.”

He added, however, that where a patient is not reviewed it may mean a missed opportunity to intervene in their care and treatment.

“In a case where someone is living alone that is a clear example of how things might go astray. In that situation people could get into bother down the road and end up in A&E for example,” he said.

“The worry is that in some cases, they (GPs) may be missing out on an opportunity to intervene at a time that would be beneficial in the long term to that patient.”

The key issue for Professor Passmore is what happens post-diagnosis and he suggests that a structured one-year post diagnostic support programme should be put in place to formalise what happens after someone receives a diagnosis. “It is happening here but it’s patchy,” he said.

The Royal College of General Practitioners in Northern Ireland also highlighted the limitations of QOF data and what it does not capture.

There could be many reasons why a patient with dementia may not be reviewed by their GP within a 15 month period, Dr John O’Kelly, Chair of the organisation said, adding support to calls to examine the data further.

“It would be interesting to know why these patients haven’t had a review recorded. It would certainly be worth drilling down into the data to establish why. At the moment it is an unknown. QOF doesn’t tell you why or what is going on and there are half a dozen possible reasons. It would be an interesting exercise to look at this and for some research or an audit to be carried out to establish the reasons why.

“It could relate to the degree of dementia, whether a patient has early onset or mild dementia and is not on any treatment and they might slip through the net. It could be a misdiagnosis or a change of diagnosis; or it could be a case of a patient with dementia having a stroke for example,” Dr O’Kelly said.

“Those at the more severe level are often being reviewed by the memory teams and often have a key worker. I think a lot of the time these patients are being seen but possibly not coded for,” he added.

DEMENTIA RATES ARE RISING IN NI

The fact that one in six patients with dementia was not seen by their GP for 15 months also gave cause for concern for the Alzheimer’s Society in Northern Ireland.

The society’s operations director Bernadine McCrory said: “Because dementia is a progressive condition, a person’s needs will change significantly over time, so a regular review should form part of their care plan.

“Alzheimer’s Society would be concerned if this is not happening and if it means people with dementia are missing out on care and treatment which could impact on their quality of life and their general wellbeing.”

Diagnosed with dementia three years ago, Martin Murtagh attends his GP almost every month.

For 65-year-old Martin Murtagh from North Belfast, who was diagnosed with a hereditary form of Alzheimer’s disease three years ago, attending his GP every month to six weeks is vital for his continued wellbeing.

Martin is one of four siblings in a family of nine children diagnosed with dementia. When he first noticed signs of memory loss in 2013, he was fearful about what the future might hold given his family history but, despite this, he picked up the courage to go to his GP.

Today Martin, who is an active member of the organisation Dementia NI, regularly sees his GP and attends a memory clinic. He explained: “I’m seeing my GP more now than I was three years ago. I see my GP every four to six weeks and it’s because of the dementia. It gives me peace of mind. ... I feel great when I come out. It’s for the reassurance."

Click here to read more about Martin’s story.

Meanwhile Department of Health data on disease prevalence across Northern Ireland reveals that the number of people diagnosed with dementia has continued to increase year-on-year, with more than 13,600 people diagnosed with dementia by 2015/2016.

It is estimated that a further 7,000 people are living with dementia in Northern Ireland but remain undiagnosed.

In 2014 The Detail mapped dementia prevalence rates across Northern Ireland for the first time, read here.

In the map above, we have updated this data using information from 2015 -16 to show the latest picture - we have focused on the prevalence of dementia in the population over the age of 50. The Department of Health, however, records the prevalence of dementia among the general population.

DEMENTIA RATES UNCLEAR IN REPUBLIC

QOF data is used to plan for the care and support of people living with dementia in Northern Ireland.

In the Republic of Ireland, however, no such data exists and consequently there is no clear picture of how many people are diagnosed with dementia and more importantly how many may be undiagnosed.

Current estimates suggest there are 55,000 people living with dementia in the Republic and that this figure is forecast to rise to 152,000 by 2046 as the older population grows.

These estimates are based on extrapolations from population figures using European prevalence rates.

It is not standard practice for GPs to keep a record or register of how many of their patients have a diagnosis of dementia. Family doctors are not financially incentivised to do this like their counterparts in Northern Ireland.

The Department of Health in the Republic, however, is now testing the potential value and impact of funding GPs to record and provide data on asthma and diabetes.

There is no commitment or current plan to roll out these financial incentives to dementia or other chronic illnesses as of yet but, according to Cork GP Dr Tony Foley, there would be significant value in doing so.

Dr Foley, a lecturer in general practice at University College Cork, is carrying out research under the National Dementia Strategy in the Republic and believes there is merit in GPs developing practice registers for illnesses like dementia.

This, he said, would inform national prevalence data and potentially the development of a register for dementia.

Dr Tony Foley, a lecturer in general practice at University College Cork.

“This is the first time in the Republic of Ireland that GPs have been incentivised to proactively manage chronic diseases. I believe that dementia needs to be prioritised for chronic disease management. We have learned from the UK and elsewhere that to meet the targets of optimal chronic disease care, practitioners need to be adequately reimbursed. If GPs were incentivised to manage dementia this would lead not only to improvements in the quality of care of patients but also to massive savings to the state,” Dr Foley said.

“We need a dementia calculator like that in the UK, which provides a picture of how many patients are diagnosed with dementia in any particular area. With this baseline data we could, for the first time, identify the number of patients diagnosed and potentially undiagnosed when compared to current estimates,” he added.

The Department of Health in the Republic said the National Dementia Strategy set out a number of "actions" to improve the coding and recording of dementia diagnosis and prevalence but that this work would be dependent on available resources.

These actions, which include developing GP practice-based registers and improved coding and recording of dementia diagnosis in hospitals, will be implemented by the Health Service Executive (HSE).

A spokesperson for the Department said: “The National Dementia Strategy clearly distinguishes between actions that can be progressed within current resources and those which will require additional resources to implement”.

“It is anticipated that actions in all of these areas together with the planned development of the Electronic Health Care Record will lead to better information on dementia patients in primary, secondary and long term care.”

The Health Service Executive (HSE) also confirmed it is currently testing a software tool to capture information about older people with dementia in hospitals and community services, with a view to rolling the tool out nationally.

The InterRAI Single Assessment Tool (SAT) is being piloted in four hospitals and community services in Dublin, Galway and Cork this year. The HSE has spent €1.4 million on the tool to date and is currently using the tool to assess older people in need of long-term care.

“Following an evaluation of the implementation in the four hospitals and community areas it is planned to extend implementation nationally,” the HSE confirmed.

In the meantime a new dementia audit tool for GPs is in development. When it is launched later this year it will enable GPs to identify the number of patients currently diagnosed with dementia and also those prescribed medication for dementia in their practice.

Dr Foley, who has been centrally involved in the development of the tool with the Irish Primary Care Research Network, said it will enable GPs to audit their practice to identify all patients that may have dementia, creating an updated register of all patients with dementia.

The tool has been developed for use by individual GPs but, as it stands, will not create a national dementia register, which would require government support.