Mental and physical health go hand in hand, but the impact of long term conditions on people’s mental wellbeing remains a neglected area. Healthcare organisations and charities talk to Healthcare Leader about how they would like ICBs to tackle the issues.
When a person is diagnosed with a long term condition, the focus of care may be on their physical health. But that condition can have an impact on their mental health too.
Dealing with chronic pain, coping with the rigors of treatment, and living with a life threatening or life limiting condition can all affect someone’s mental wellbeing.
The scale of the number of people experiencing these problems should not be underestimated. Around 30% of people with a long term condition also have mental health comorbidities, according to NHS England.
And a report by The King’s Fund found that more than four million people in England with a long-term physical health condition also have mental health problems, and many of them experience significantly poorer health outcomes and reduced quality of life as a result.
These problems come at a cost, not only to people’s health, but also to the health service. In terms of NHS spending, at least £1 in every £8 spent on long-term conditions is linked to poor mental health and wellbeing – between £8 billion and £13 billion in England each year, The King’s Fund says.
Work has also been carried out into the impact of particular long term conditions on people’s mental health. For example, Parkinson’s UK highlights that up to 40% of people living with the condition will have depression, up to 31% will experience anxiety, and between 50% and 60% will develop psychotic symptoms as their condition progresses.
Living with Parkinson’s means ‘there is a high chance you will have to navigate mental ill health at any one time’, says Gini Dellow, policy manager, mental health and dementia, for Parkinson’s UK.
This May, healthcare organisations and charities representing people with long term conditions, including the Royal College of Psychiatrists, the British Psychological Society, The King’s Fund, Parkinson’s UK, and Kidney Care UK, shone a light on ‘the importance and depth’ of the issue of mental health and long term conditions, when they raised this as a debate in Parliament.
During the debate, Labour MP Peter Dowd shared some of the issues and concerns highlighted by organisations. These included how ‘poor physical health is inextricably linked with poor mental health, and both can be exacerbated by social context, or in other words where and how we live’, according to Urban Health.
And charity Marie Curie said: ‘While parity of esteem between mental and physical health is enshrined in law it is not yet being realised. There is limited access to mental health support, insufficient training for health and social care professionals and poor integration of palliative care and mental health care.’
Common mental health difficulties
Healthcare organisations and charities also spoke to Healthcare Leader about the current and ongoing issues involved regarding the mental health of individuals with long term conditions.
‘We know that people living with a long term physical illness are twice as likely as the general population to experience mental ill health, and that predominantly depressionand anxiety are the most common mental health difficulties,’ says Andy Bell, chief executive for the Centre for Mental Health.
‘We know also that support for people’s mental ill health if they’re living with a long term physical condition is often either non-existent or quite basic at best,’ he says.
In 2021, the Centre for Mental Health looked across long term conditions in a report with National Voices called Ask How I Am.
‘What we found is there are a lot of risk factors which are directly caused by, or associated with having a long term condition’, he says. ‘There’s both the shock of receiving the news, or becoming very unwell. Often, for many people, as their illness progresses you get these almost traumatic moments in life – as we know, traumas are a trigger for poor mental health,’ he says.
Then there’s the illness burden – people may be in chronic pain, their mobility might be restricted, they may be worried about how long they will live and what that means for their family, says Mr Bell.
On top of that there is the treatment burden ‘of all the appointments, and all the medications, some of which can make you feel worse than the illness itself’, he says.
Alongside that is the economic and social burden. ‘If you’re not able to work that means you’re more likely to be living on a low income,’ he says. There is the effect on relationships. And there can be a sense of isolation – ‘of being different, and left behind’, he says.
For those faced with these issues there can be barriers to accessing support. ‘We hear from many people that either they didn’t know how to ask for help, or who to ask for help, and sometimes when they did, there was nothing there, or it wasn’t that useful’ says Mr Bell.
Physical health professionals may lack awareness about mental health, he says. And when mental health support is available, it is often a generic mental health service, where there is no specific understanding of the impact of the illness. ‘If you have been referred to an NHS talking therapy service you might spend half your sessions trying to explain what it’s like to live with kidney disease or diabetes,’ he says.
The NHS Talking Therapies for anxiety and depression programme (formerly known as IAPT) was developed to improve the delivery of, and access to, evidence-based, NICE recommended, psychological therapies for depression and anxiety disorders within the NHS. People with long term conditions may be referred to these services.
However, there is currently a lack of data on how well these services are supporting people with long term conditions, and how access matches what the local population need is, says Dr Helen Gilburt, fellow in health policy at The King’s Fund.
Lack of integration
‘An ongoing challenge is integration of physical and mental health,’ she says. ‘Overall, there’s still a pattern of people either being seen in physical health services or mental health services. NHS Talking Therapies for people with long term conditions is a method of trying to join those up. But there’s still a long way to go to join up the physical and mental healthcare of people,’ she says.
‘One of the biggest issues is the lack of integration between physical and mental health services,’ says Dr Jon Van Niekerk, chair of the Royal College of Psychiatrist’s General Adult Faculty. ‘This often leads to fragmented care where mental health needs are not adequately addressed within the context of a person’s physical health condition,’ he says.
‘Traditionally, access to mental health services can be challenging with long waiting times and geographical disparities,’ he says.
Dr Rebecca Houghton and Dr Mark Griffiths are consultant clinical psychologists at the British Psychological Society’s Division of Clinical Psychology – Faculty of Clinical Health Psychology. They specialise in the provision of psychological care to adults living with physical health and neurological conditions.
Examples of proven cost-effective models of integrating psychological care into physical care and rehabilitation pathways ‘are not adequately learned from or scaled up with new investment, indicating lost opportunities to improve access to cost-effective integrated physical and mental health care’, they say.
‘Demand outstrips current capacity to provide psychological care to those people living with the psychological and mental health consequences of living life with a long term physical health condition,’ they say.
They point out that there is ‘no consistent method of commissioning a practitioner psychology workforce across the UK, leading to very limited (or no) access to relevant psychological services for many healthcare pathways (or regions), despite clinical standards advising inclusion of psychological professionals within multi-disciplinary health care provided’.
And there is ‘a lack of routine monitoring of psychological and mental health needs for those living with long term physical health conditions’, they say.
For people with kidney disease, there is the sickness and exhaustion caused by the condition, the dialysis, which is necessary to keep them alive, the uncertainty of waiting for a transplant, and that waiting lists for transplants are at a ten year high post pandemic. Then there are the rocketing fuel bills, financial worries generally, and employment concerns. ‘All of this impacts on mental health,’ says Fiona Loud, policy director at Kidney Care UK.
People tend to describe the most distressing part of living with Parkinson’s as the mental ill health,’ says Ms Dellow. Mental health issues can be caused by changes in the brain, side effects of medication, or ‘the whole adaptive process of being diagnosed with Parkinson’s’, she says.
People living with Parkinson’s are ‘frustrated there is a lack of joined up care between their mental and physical health’, and ‘feel their care is fragmented and disjointed’, says Ms Dellow. They may have multiple appointments, having to retell their stories several times – which can have a greater impact on their mental health, because telling these stories can be quite triggering, further increasing their distress, she says.
The challenges for ICBs
Providing effective support for the mental health of people with long term conditions represents a considerable challenge for ICBs.
People with long term physical health conditions and mental health problems will be part of a larger population currently struggling to access mental health services, says Dr Van Niekerk.
There were 6.96m referrals to mental health services in England in the last year including NHS Talking Therapies, up from 5.5m in 2019-20.
The challenge for ICBs is ‘significant’, says Dr Van Niekerk. ‘ICBs are trying to meet the growing demand for mental health services with limited resources, there are workforce issues with a shortage of mental health professionals, and this makes it difficult to provide the necessary care and support to everyone who needs it.’
Another challenge for ICBs is that ‘physical and mental health services tend to be more siloed’, says Dr Gilburt. ‘So your starting point is more challenging to try and join up that care,’ she says.
ICBs ‘hold a key position in relation to supporting the development of joined up service provision to support the mental health needs of those living in their community with physical health conditions, and with chronic and progressive neurological disease’, say Dr Houghton and Dr Griffiths of the British Psychological Society.
‘This challenge necessitates a good understanding of the local needs within the community, and regular and planned communication with stakeholders to set or review targets via routine outcome measurement,’ they say.
‘ICBs will be required to make challenging but key decisions, to enable the necessary investment in the psychological workforce to improve access to integrated care under medical care and rehabilitation pathways – investment that can then be expected to yield cost-effective and quality of care improvement gains, but which will require significant investment to realise these,’ they say.
The picture of support for people with long term conditions experiencing mental health issues varies across England.
‘What we find is there is geographical difference, and significant regional variation,’ says Dr Van Niekerk. ‘The quality of services are not consistent across the country.’
‘We do hear of pockets of excellent care,’ says Ms Dellow. ‘We hear about pilots where integrated care exists. We know there can be cost savings that are made when clinics offer a higher level of integration. And we hear from patients and clinicians who extol the virtues and benefits of good joined up care.’
However, overall, the issue of people with long term conditions experiencing mental health difficulties does not seem to feature much on any list of healthcare priorities and concerns to address.
Mr Bell says: ‘This issue is largely ignored, from both mental health and physical health services. It’s nobody’s priority.’
He says for integrated care boards ‘it’s a big, hidden, expensive problem, but because it is expensive there are ways of shifting some of that resource to do things that will help people better and could quickly reduce costs in other bits of the system’.
The government’s announcement of plans to make the Mental Health Act ‘fit for the 21st century’ could mean the millions of people with long term conditions experiencing mental health issues will be able to access the support they need.
In the recent King’s Speech, the government pledged to modernise mental health legislation, and ensure that mental health gets the same attention and focus as physical health.
And the focus on long term conditions is likely to shift more into the primary care space, given that the new health secretary, Wes Streeting has committed to ‘reversing’ the underfunding of primary care and to make more of a neighbourhood health service.
A wish list for ICBs
Healthcare Leader asked healthcare organisations and charities what needs to improve, and what more needs to be done to better support people with long term conditions experiencing mental health issues.
Mr Bell says that a ‘significant shift’ is needed in both physical and mental health support. Physical health professionals supporting people with long term conditions should have some basic level knowledge and training in mental health, he says. It’s about ‘knowing how to have a conversation, how to identify when someone might be struggling with their mental health, and what support is available locally,’ he says.
‘We then need a range of different options for supporting people’s mental health,’ he says. This could be having a mental health professional as part of a team treating a long term condition, for example someone embedded in a local renal or Parkinson’s service with an understanding of what it’s like to live with these conditions, providing psychological support.
‘And practical and financial support needs to be available for managing money, work, and all the other things that matter to people, and are made harder by having a long term condition,’ says Mr Bell.
A range of different offers’ that give the right support for individuals is needed, rather than one single intervention – ‘no one size fits all’, he says.
The issue of people with long term conditions experiencing mental health problems ‘hasn’t got the attention it deserves yet, either nationally or locally’, says Mr Bell. But even with awareness of the issues, ‘possibly the biggest barrier’ is the workforce challenge. ‘We really need to give it the priority it needs, put the training in place, both for physical and mental health professionals, and make sure jobs are properly funded,’ he says.
ICBs could ensure the services they are commissioning, like talking therapies, are collecting data, so they have a better understanding of who is getting access to those services. They are then also able to better track the outcomes for those people with long term conditions who access the service, says Dr Gilburt.
It’s about ‘having good data that allows you to understand what is the extent of need, and to what extent are you meeting that need, and improving outcomes as a result’, she says.
The Royal College of Psychiatrists would support ‘an individualised approach’ to those with long term physical health conditions who have particular issues that need to be dealt with and therapy related to their living with a long term condition, and an individualised approach to that condition itself, says Dr Van Niekerk.
‘The whole of mental health is moving towards a more personalised approach, so this fits in with the wider agenda of more personalised care,’ he says.
‘Overall, we need better integration of mental health and physical health services,’ he says. This means ‘fostering closer collaboration and communication with healthcare providers possibly through shared electronic health records and other technological innovations’, he says.
‘We must promote patient centred care by involving patients, enhancing education programmes to improve self-management and awareness,’ says Dr Van Niekerk.
When ICBs think about integrated care, they also have to think about ‘how do we integrate the patient voice and carer’s voice in that strategy – that’s crucial’, he says.
Dr Houghton and Dr Griffiths of the British Psychological Society would like to see ‘a consistent use of a transparent commissioning strategy, based on evidence based practice/clinical standards, to support a consistent provision of integrated psychological care; providing equitable access to patients, to meet the psychological and mental health needs of the physical health population’.
On their wish list for ICBs is ‘better communication between ICBs and clinical experts to support informed commissioning and review of service provision and better engagement at local system level with all chief psychological professional officers in the ICS’.
Also on that list, is the inclusion of chief psychological profession officer representation on ICBs, who specialise in service and clinical pathway design, delivery and governance of psychological care.
‘As a group of professionals with expertise in the understanding and delivery of psychological care to people with both physical health and mental health needs, we would value a closer working relationship with ICBs,’ say Dr Houghton and Dr Griffiths.
‘We welcome an invitation for lead practitioner psychologists to join ICBs to support the commissioning, delivery and review of high quality, effective services and to look towards the challenge of improving the wellbeing of communities,’ they say.
Parkinson’s UK would like to see joined up care, with services commissioned ‘that mirror the good’ – integrating care, prioritising prevention and early diagnosis mental health support, and addressing workforce issues and training needs, says Ms Dellow.
‘We also need a focus for commissioned services that address the wider social determinants of mental health, she says, and services commissioned for people living with long term conditions such as Parkinson’s need to not only look at their physical health, but also their psychological and emotional health, ‘so you get holistic, patient centred care’, she says.
Kidney Care UK has laid out ten recommendations in its Psychosocial Care Manifesto.
These include that ‘every kidney patient should have their psychosocial care needs assessed using validated methods, and should be provided with appropriate psychosocial care that fully supports their level of need, as part of their standard NHS care’, says Ms Loud. ‘And psychosocial care needs should be integrated into kidney patient care plans,’ she says.
‘We really want the UK and the devolved governments to work towards achieving an integrated whole system approach to the social and emotional wellbeing of everyone living with kidney disease,’ she says.
And talking therapies are ‘too generic’, says Ms Loud. She would like to see people with kidney disease receiving ‘renal specific support’ and ‘something much more personalised that relates to the individual’s condition’.
If nothing changes for this population, ‘as we have an aging population and more people are living more years with illness, more people will suffer’, says Mr Bell. ‘More people will require more expensive treatment, have poorer quality lives, less good healthcare, poorer outcomes of healthcare, and in some areas probably die sooner, because if a condition is managed less well that has an effect on life expectancy,’ he says.
The consequences of issues not being addressed will include that ‘commissioning decisions do not adequately address the need within the long term conditions population, leading to a continued decline in community wellbeing, increased mortality rates and increased use of hospital and emergency health care provision – all of which is avoidable through appropriate psychological workforce investment and better integrated care planning’, say Dr Houghton and Dr Griffiths.
‘Integrated care needs to be just that,’ says Dr Van Niekerk. ‘We can’t work in silos, because patients don’t come with one diagnosis – there are complex mental and physical health needs. And the solution to this has to involve the whole person, to be patient centred, and to involve carers.
‘It takes a community to have good physical and mental health care, and we need to keep ourselves accountable to the mission of what integrated care is all about,’ he says.
‘The big question for ICB leaders is: what do they understand about the level of need that they have in their population- so the number of people with long term conditions. How many of those people are getting access to good mental health support, and what are the outcomes of them receiving that care?,’ says Dr Gilburt.
‘These “fundamental questions” let you think about: is there more we could be doing to make sure that people who have those needs are getting access, she says. ‘It comes down to having that understanding of your population’s needs and understanding what your data is telling you,’ she says.
‘There is a massive opportunity to take that understanding that we are slowly beginning to build – that mental and physical health are hand in hand – you can’t separate them and trying to do so has caused so much harm,’ says Mr Bell.
‘Taking the step from recognising that, to doing something about it, at scale, sustainedly – it feels like that’s the real barrier,’ he says. ‘Any ICB that had a determined effort to do that ‘could reap huge benefits for its population,’ he says.
Mr Bell would like ICB leaders to ‘make a commitment to try to make a difference in this area’. ‘It won’t happen overnight, but any positive steps will help to move us in the right direction,’ he says. And he hopes they will ‘make a commitment to try to turn this around, knowing it will not be the work of one year – it will take time. But the worst thing any ICB can do is do nothing.’
NHS Humber and North Yorkshire ICB work on creating better links between physical and mental health
The Humber and North Yorkshire Cancer Alliance is currently working towards developing a psychosocial support offer for cancer patients, in partnership with Macmillan and some of the Integrated Care Partnership organisations – for example, mental health provider trusts.
During the past 12 months, the Alliance has ‘developed even closer working relationships with local cancer support groups, which help to support a cancer patient’s emotional wellbeing through peer-to-peer support’, says a spokesperson for Humber and North Yorkshire ICB.
‘A patient’s mental health and emotional support requirements are discussed during their holistic needs assessments and are reflected in their personalised care plans. The Cancer Alliance also works extremely closely with Macmillan Cancer Support, which provides a substantial amount of emotional support to cancer patients in our area,’ they add.
Two of the twelve winners of Humber and North Yorkshire Cancer Alliance’s inaugural Cancer Innovation Grants programme are projects which focus on improving mental health and wellbeing among cancer patients – while several more winners feature mental health and wellbeing support among their proposals.
NHS talking therapies long term conditions arm of the service is another example of how the ICB is supporting the mental health of those with long term conditions. North Yorkshire and York and Selby offer these services in the region, which provide early intervention to avoid or limit the need for medication and time off work.
As a system, one of the big four health priority outcomes the ICB has is ‘enabling mental health and resilience’.
‘We want to create better links between physical and mental health and make sure patients with mental health issues get the same attention of those with physical illnesses,’ the ICB spokesperson says.
