Interactive map –
Systemic influences on parent carer mental health
Hover over the map and click on the shapes to explore more about each factor and how they link together.
Below the map you can find more information about how the factors influence each other, lived experienced quotes from parent carers, and suggestions for how services and professionals can improve support. Many of these suggestions are small changes that could have a big impact.
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Family social factors
Factors
- Parent carer social support network
- Parent carer peer support
- Quality and stability of family relationships
- Housing and stability of home environment
Social factors such as a parent carer’s support network, access to peer support, and family stability can make a major difference in their wellbeing and ability to advocate for help.
Parent carers who have encouragement, understanding, and help from others often feel less isolated and more able to persist through complex systems. In contrast, those facing instability at home, insecure housing, or limited social connections may experience increased stress and struggle more to access the right support for themselves and their children.
Services should recognise the importance of parent carers’ social networks and actively help families build and sustain them. For example, local services should ensure that they are facilitating peer support, linking families to community resources, and offering practical help when home or family stability is at risk. Providing respite and care support can enable parent carers, who are otherwise caring full-time, to maintain their social links.
Strengthening social supports can reduce isolation and improve parent carers’ mental health and wellbeing.
Selected quotes from parent carers
“The actual parents, the peer support, I think, is quite key, but the services and the finances need to support them to be able to carry on running. All it takes is for something to happen to one person, and those groups fall apart.”
“The times when I felt that I wasn’t alone was when I went to the [parent groups].”
“I do think this [peer support] group that I went to last week… never done anything like that before because it’s never available… it’s been fantastic. It’s safety in numbers, isn’t it?”
“More needs to be found for parents who are dealing with it and needing somewhere to go with people who have been there and understand not someone who has never been a SEN parent.”
“Recently I attended a parent support coffee morning in [local children’s hospital] whilst [my child] accessed an educational day in their school room. It was extremely helpful to meet other parents to discuss how we manage and support our children and our own health, but it is only available for 1 hour twice a year! More options to access mental health support for ourselves including virtual / online speaking therapy / group work would be so beneficial to many of us.”
Parent carer individual factors
Factors
- Parent carer disability / neurodivergence status
- Parent carer language & literacy skills
- Parent carer support seeking beliefs
- Parent carer stigma / shame
- Parent carer cultural background (majority / minority)
- Parent carer confidence advocating for support
Individual factors play a major role in shaping parent carers’ ability to access and ‘fight’ for support. Parent carers who are themselves disabled, neurodivergent, or who face language or literacy barriers may find it harder to complete forms, communicate needs, or persist with complex processes, particularly when stress or mental health difficulties are already present. These challenges can be intensified by social care policies which mean that assessments of need are conducted from a position of assuming parental failings, which can leave parent carers feeling blamed or unsupported.
Family cultural factors such as views on disability, beliefs about seeking support, experiences of stigma, and cultural background strongly shape how parent carers engage with services. In some families, asking for help may be seen as a sign of weakness or poor parenting, while others may fear being judged or misunderstood, particularly if they come from minoritised or marginalised backgrounds. These experiences can reduce trust in professionals and lower parent carers’ confidence to advocate for themselves or their child.
Services can help by offering clear, jargon-free communication, advocacy or translation support, and flexible, inclusive pathways that reduce cognitive and emotional load and recognise parent carers’ diverse needs and capacities. Creating culturally responsive, non-judgmental environments that recognise and value families’ backgrounds helps reduce stigma, build confidence, and makes it easier for all parent carers to ask for and receive the support they need.
Selected quotes from parent carers
“So we got seen a lot quicker and things got turned around a lot quicker because I was squirrelling away in the background working out. And I can only do that because I’m an English speaker, because I have a family with medical backgrounds… and I think if you don’t have access to those things and English is your second language or third language, you're screwed, absolutely screwed.”
“Support networks / groups are limited to certain areas… there is limited access for parents like me with disabilities and energy limiting conditions… I don’t drive.”
“And services that are set up to support people, it feels like they don’t really understand the Equality Act, and accessibility, and all those sorts of things. And it feels like, because I’m articulate, and maybe because it’s my actual paid role, as well, it’s very hard for people to respect or understand that I can’t… I’m looking at hiring a PA for myself, using my PIP, to get a PA to help me with this stuff, to get my children’s things moving. Which is just insane.”
“I feel there still remains a stigma around expressing needing supporting with mental health, especially when intertwined with the parent / carer role and the burden of care.”
“The hardest thing is getting the Dads to actually do something, and to realise they do need the help… obviously you do have some Dads that see ‘mental health’ and everything else as showing a weakness. They should be there to support their partner, their wife. They can’t be seen to be this way.”
“Need to include or find ways of outreaching to ethnic minority groups. I was diagnosed autistic in later life and made sense why I struggled with mainstream intervention.”
Financial security
Factors
- Parent carer capacity to work / flexible working
- Parent carer financial security
- Changes to entitlements
- Parent carer ability to fund private/independent care, assessments, essentials
- Level of support required for parent carer and / or child
Family financial security plays a crucial role in whether parent carers can access the right support for themselves and their children. Many parent carers of children with SEND find their capacity to work reduced due to the time, unpredictability, and emotional energy involved in caregiving. Some can only work limited hours or must stop working altogether, which directly impacts household income and stability.
The high carer burden of managing multiple appointments across education, health, and social care often requires parent carers to take time off during the working day, further reducing earning capacity and increasing financial strain. These pressures are often intensified by changes to benefits or entitlements, which can create uncertainty and leave families vulnerable to sudden drops in income.
System pressures and long waiting lists lead many parent carers who have the financial means to pay for private assessments, which creates inequity in the system. Financial stress and intensive caregiving demands can also place significant strain on family relationships, increasing the risk of separation, which in turn brings further costs associated with maintaining two households. These compounding challenges can take a serious toll on parent carers’ mental health, reducing their capacity to advocate for support or maintain stability at home.
Policymakers and services should ensure families have stable financial foundations by providing predictable entitlements, timely benefits advice, and access to affordable or funded appropriate childcare options to enable access to work. Supporting flexible employment opportunities, ensuring essential assessments and therapies are provided promptly, and recognising the hidden financial impact of caregiving demands can help ease strain, strengthen family relationships, and protect parent carers’ wellbeing.
Selected quotes from parent carers
“And I feel like I’m already at a disadvantage at work, because of my caring situation. I have to have a lot of time off for appointments, and phone calls, and different responsibilities. And they’re aware of that, and they’re really flexible, but it’s almost like I’m pushing it too far when I ask for more.”
“So money helps. I’m not going to lie. Money does help because it means we’re not struggling to pay for my counselling or his swimming lessons or whatever he needs.”
Parent carer system knowledge and advocacy
Factors
- Parent carer knowledge of system and rights
- Parent carer confidence advocating for support
The English system relies heavily on parent carers to navigate a complex service structure and advocate to ensure that their child’s needs are met. Parent carers’ knowledge of the service system and their confidence in advocating for themselves and their children are crucial in shaping how easily they can access the right support. Parent carers who understand how different services operate, what their rights and entitlements are, and how to navigate referral processes are better equipped to challenge barriers and persist when things are delayed or go wrong. Previous experiences with services strongly influence this capacity. Positive encounters where parent carers feel listened to, respected, and supported, can build trust and confidence to seek further help.
In contrast, experiences of being dismissed, blamed, or left without clear information can leave parent carers wary of re-engaging or unsure where to turn next. Confidence in self-advocacy also varies greatly. Some parents feel able to challenge decisions and push for what their child needs, while others, particularly those under stress or with limited support, may find the process intimidating. Providing clear information, signposting, and free, good quality advocacy support can help reduce these inequalities and ensure parent carers are empowered to navigate the system.
Services should prioritise accessible information, proactive signposting, and advocacy support to help parent carers understand their rights and navigate complex systems confidently. Building parent carers’ knowledge and trust through transparent communication and consistent professional support can reduce inequalities in access and prevent families from being worn down by bureaucratic processes.
Selected quotes from parent carers
“But it’s the fact that there’s millions of parents who don’t have that experience, or knowledge, or understanding of the language that’s used. And the services, and how they link up, and all those sorts of things. So it upsets me on a personal level, but also it really impacts on me thinking about all the people that are struggling more than I am. And I am really struggling.”
“Not that it wasn't hard graft for me, but that it came from a place of a bit of privilege to be able to know where to look.”
“But the fact that there’s no one… I mean, …there are so many services that we access that we know to access, so clearly we are educated people who are on it, but a lot of people who are maybe less educated or less on it, less pushy, will not access and might not have a care package or enabling support.”
Parent carer stress
Factors
- Parent carer stress levels
Parent carers often experience high levels of ongoing, repetitive stress which directly impact on their mental health. This is shaped by a combination of personal, social, and systemic factors, many of which are discussed in detail in other sections.
A stable home environment and strong family relationships can help buffer stress, while instability or conflict at home can make caring responsibilities even more demanding. Having a reliable social support network makes a big difference, offering both emotional and practical help. Financial insecurity, stigma, and feelings of shame can further increase pressure, particularly when parent carers already struggle with their own mental health. Long waits for assessments or support, and the heavy administrative burden of coordinating care, often add to this strain. Feeling unheard or dismissed by professionals can heighten frustration and exhaustion. Reducing parent carer stress requires not only timely, accessible support but also systems that listen, understand, and ease the load on families.
Services should take a proactive, holistic approach to reducing parent carer stress by addressing both practical and emotional needs. This includes providing timely support, simplifying administrative processes, and ensuring families feel listened to and understood. Strengthening social support networks and promoting stable, empathetic relationships with professionals can also help protect parent carers’ mental health and resilience.
Selected quotes from parent carers
“And it’s the amount of phone calls you have to make every day, just to liaise appointments, or get medication, or get equipment delivered to the home. Get equipment serviced. Organise maintenance for a lift that’s broken down, so you can’t get your child out the house. It’s that level of the care. It’s not caring for my sons that is a problem, it’s all the stuff that comes with it.”
“Many parent carers struggle with mental health – because they aren’t listened to, have to battle against services, and spend most of their time coordinating care rather than being a parent. This often means they have lots of time off work, give up their careers, and lose sight of their ambitions and who they are.”
Service coordination and pathways
Factors
- Services working together
- Clear assessment and diagnostic pathway
- Stability of service structure
- Flexibility in service processes / thresholds
- Legal accountability
Families often depend on multiple services across education, health, and social care. When these services communicate and coordinate effectively, support is delivered more efficiently and with fewer gaps. Clear pathways are particularly important for reducing delays and helping families understand what to expect at each stage, including when assessments or diagnoses are needed to access support. However, when service structures change frequently, thresholds are inconsistently applied, or responsibilities are unclear, parent carers can be left feeling lost, overwhelmed, and unsure who is accountable for decisions affecting their child.
A lack of clear legal accountability between agencies can lead to disputes, delays, and families being passed from one service to another without resolution. Flexible, joined-up systems that respond to families’ needs and are underpinned by transparent, legally accountable responsibilities, help reduce stress and improve outcomes for both parent carers and children.
Improving inter-agency coordination and maintaining clear, consistent pathways between education, health, and social care can prevent families from falling through gaps. Services should prioritise stability, clear communication, and shared legal accountability to ensure parent carers experience a coherent, dependable system rather than a fragmented one.
Selected quotes from parent carers
“Support is often when in crisis rather than early stages.”
“Carer assessments are pointless – no money or services attached… it’s just going through the motions.”
“But I think the whole way the system works, and the lack of joined up approach between health, education and social care, adds to the mental health pressures of parent carers. And something as simple as sorting out coordination between the three of them, and understanding of the pressures that it causes, that would help the mental health of parent carers.”
“I was struggling with behaviour, and I know quite a bit about behavioural strategies with children, and they weren’t working with my son because of his specific needs. And a paediatrician said, “We’ll refer you to CAMHS for some support,” but CAMHS, their protocol, procedure is you have to go on a parenting course first. And again, I felt like I was quite insulted. I said, “Really? So you’re saying it’s my parenting?”
“You have 15 different departments and agencies in your phone book, and it’s your responsibility to make sure that they’re all in place and you can’t get them around the table together, ever.”
Professional knowledge and personalised practice
Factors
- Professional knowledge and expertise
- Personalised support and whole-family approach
The expertise and understanding of professionals is central to how well families experience support. Parent carers value practitioners who have a strong grasp of SEND and who take the time to understand their unique situation. When services are flexible and adapt to families’ individual needs, recognising that parent carer and child wellbeing are closely connected, support feels more meaningful and effective. In contrast, generic or impersonal approaches can leave families feeling unseen and discouraged. Prioritising professional development, empathy, and relational practice helps ensure services meet the diverse needs of families more equitably.
Investing in professional training, reflective practice, and relational skills can help to ensure that practitioners have both the expertise and empathy needed to respond to families’ diverse needs. Building flexibility into service delivery allows professionals to tailor support, strengthening trust and improving outcomes for parent carers and children alike.
Selected quotes from parent carers
“If we knew about groups right at the start, and all of that, it would have made a lot more of a difference to us.”
“So fundamentally there needs to be people who know what is available to parent carers who can say, ‘Right, you can access this, this and this,’ or ‘you need support accessing it, this is how you do it’. So that is probably the missing piece and that should include support for mental health if it’s available.”
“I had a phone consultation with a social prescriber. He didn’t really have understanding about the restrictions on what I can do as a parent carer. Any mental health support for parent carers needs to understand this.”
“I had to explain why I was feeling stressed, why it was a stressful situation, why I felt that in some meetings with professionals, the control was taken away from me, and the impact of that. All those little nuances, it’s so important that someone gets that, and understands the impact, and you don’t have to justify and explain why you’re feeling the way you’re feeling.”
“There have been some professionals over the years that we’ve dealt with that have gone beyond the scope of their job. And it’s always made a huge difference. Even if it’s just suggesting what benefits you can apply for, or have you heard about this service. Just having enough knowledge to suggest things.”
“And then people I spoke to who did find things helpful, were people that knew the context. So perhaps they’ve got a bit of background in special educational needs or behavioural stuff, that kind of practical support as well, that they understood.”
“I want healthcare professionals to have evidence-based and lived experience-based signposts. Because they’re doing it all from a script.”
Service communication and administration
Factors
- Administration requirements for parent carers
- Service transparency and communication
Effective communication between families and services underpins trust and engagement. Parent carers value openness and clear information about what support is available and how decisions are made. When communication breaks down or processes are overly complex, families often feel excluded and burdened by excessive administrative tasks. Completing forms, chasing responses, and repeating information across services can be time-consuming and emotionally draining. Simplifying paperwork, improving transparency, and ensuring parent carers have clear points of contact can make the system feel far more accessible and humane.
Simplifying communication channels and reducing administrative burdens can significantly improve families’ experiences of support. Providing clear, consistent information and a single, trusted point of contact helps build trust, reduces frustration, and enables parent carers to focus their energy on their child’s wellbeing rather than navigating bureaucracy.
Selected quotes from parent carers
“Everything you need as a carer, for your children, is behind closed doors. So you spend your life trying to open those doors and find the magic gatekeeper who will magically let you into that service, even though by rights they should, just to get help for your kids.”
“One of the things that’s helped, is I’ve got an app on my phone, that [my local hospital] uses. So when we go to [my local dental hospital], they use it. All communication is on the app, all clinical letters are on the app. You can send a message to the clinician, and they will reply to you on the app. That’s been really helpful. But it’s obviously only part of the care that I deal with. So that has been a practical help.”
Parent carer-professional relationships and trust
Factors
- Consistent staffing
- Quality of the parent carer-professional relationship
- Parent carer & child feeling heard
- Parent carer engagement with services
Strong, trusting relationships between parent carers and professionals are central to accessing effective support. When parent carers and children feel heard, respected, and understood, they are more likely to engage positively with services and feel confident in the help they receive. Consistency in staffing is key; frequent changes can disrupt trust and mean that families must repeatedly retell their story, which can be emotionally painful and exhausting. High-quality relationships are built on good communication, empathy, and a genuine partnership approach, where parent carers’ expertise about their own child is valued.
Professional accountability also plays an important role in sustaining trust. When professionals listen, act transparently, honour commitments, and take responsibility for following agreed procedures or statutory duties, families feel safer and more supported. In contrast, when accountability is unclear or promises are not upheld, parent carers can lose faith in the system. Trustworthy, consistent, and accountable relationships not only improve access to appropriate support but also protect parent carers’ mental health and wellbeing.
Prioritising relational continuity, empathy, and professional accountability can greatly strengthen families’ trust in services. Ensuring that staff follow through on commitments, communicate transparently, and uphold statutory responsibilities helps build confidence, sustain engagement, and protect parent carers’ wellbeing.
Selected quotes from parent carers
“It’s all piecemeal. I just want an overarching someone to take ownership, and just meet the children, and work according to their needs.”
“That in itself is one of the most frustrating things, to have a professional in front of you smiling and nodding but not listening.”
“One organisation in particular… the lady actually came out and we had a cup of tea and we sat and she gave me an hour of her time and that really, really helped. It’s more personal.”
“One of the things also that I know a lot of people experienced in our area is that social workers don’t remain in post for very long. So, you get different social workers along the lines, so there is no consistency there. You are also finding that you are having to go through the same information and restart every time.”
“The more I’ve been involved with them, the better they are at checking in just on me, which is great.”
“I had that Occupational Therapist, she was awesome, but she left, and then I’ve had nobody else ever since, and even though I work for the service, I haven’t been able to get back into the service, to get them to carry out the pieces of work that hadn’t been completed when she left.”
Equity of provision
Factors
- Local service provision
- Perceived disparity in provision
- Length of wait for support
- Next steps / follow-on support
Access to appropriate support can vary widely between local areas, leaving many parent carers feeling that help depends more on where they live than on what they need. Differences in local service provision, eligibility criteria, and available resources can lead to significant disparities in the type and quality of support families receive across localities. Furthermore, Local variation in services, thresholds, and communication can create significant inequalities, meaning that where a family lives and how well they can manage the system often determines what help they can access.
Even when initial support is provided, parent carers often describe uncertainty about next steps or a lack of follow-on support, leading to gaps in care and a sense of being left to manage alone. Frequent changes to local thresholds or eligibility criteria are often made without clear communication to families, creating further confusion and frustration as parent carers may find that what qualified them for help one month no longer applies the next. Families with strong relationships with professionals or the ability to afford private options often receive help more quickly. Families in less stable housing may also find that moving between areas means starting over with new systems, thresholds, assessments, and pathways to provision.
Ensuring that access to services is consistent, transparent, and based on need rather than location is essential for promoting equity and protecting family wellbeing. Services should work towards greater national consistency in eligibility, assessment pathways, and follow-on support to reduce postcode-based inequalities. Streamlining processes, improving communication about local changes, ensuring continuity of care when families move, and maintaining timely access to interventions can help make support fairer, more reliable, and less exhausting for parent carers.
Selected quotes from parent carers
“I am fed up with it being a county-by-county process, with the Education Health Care Plan process in [one county], it’s different to the one in [another county]. It’s different to the one in [a third county]. It needs to be the same across the board.”
“There is also a ridiculous wait for help once you have the courage to admit you need it.”
“The waiting lists for NHS (National Health Service) support via CAMHS (Child and Adolescent Mental Health Service) and EHCP (Education, Health and Care Plans) applications etc. are far too long to be of any use.”
“I did feel like I wanted to ask lots of questions and there never seemed to be that breadth of opportunity to do that, and I noticed that a lot with a lot of the parents I work with in that they, you know, they might have children who are going down the pathway and then they get a diagnosis and then they don't really get the information as to how to deal with it, how they feel about it, or what to do with it. So it was a case of, I mean, I was just told to go off and research it, really. Which is almost the basics. But yeah. So that was quite lonely. It felt very lonely after we’d got that.”
“It’s pot luck what you get from area to area, I’m sure it is.”
“We are lucky in that our NHS (National Health Service) have just started putting mental health support teams into schools. So we’ve got a few schools now that can access this mental health support team, and they’re psychological well-being practitioners. And that’s been really well received within the schools that have got it. But it's like a postcode lottery, isn’t it?”
Family’s access to support
Factors
- Access to appropriate support for parent carer and / or child
Access to appropriate support for parent carers and their children plays a major role in parent carer mental health. Access depends on how well different parts of the system work together, as well as on the circumstances of each family. Many parent carers describe the process as exhausting, confusing, fragmented, and emotionally draining, having to repeatedly tell their story, chase updates, or coordinate between professionals with limited communication between services. Long waiting times for assessments or interventions often add stress and can worsen both children’s and parent carers’ wellbeing. These pressures take a personal toll, leaving many parent carers feeling isolated, anxious, and exhausted.
The quality and consistency of professional relationships also matter: knowledgeable practitioners, stable staffing, and clear diagnostic or assessment pathways help families feel supported and reduce the burden of navigating complex systems alone.
Improving access requires joined-up systems that minimise local variation, prioritise children’s rights, adequately fund services, and reduce reliance on families’ advocacy or financial resources. Investing in workforce stability, clear pathways, and accessible information can help ensure that all families, regardless of background or location, receive timely, coordinated, and fair support, which will protect parent carers’ wellbeing and capacity to cope.
Selected quotes from parent carers
“I’m tearing my hair out trying to find support for him elsewhere and haven’t been able to find it. All of those things affect my mental health.”
“Mental health would be better if there was more support for the children. I have two out of school unable to access education. If they were supported, I wouldn't be so isolated, could work, have a semi-normal existence. Instead, I see nobody but professionals for my children. Every day is filled with admin and appointments. I have no life.”
“Poor mental health in carers is not a standalone thing, it is directly related to the lack of support our children have and the fight that we have trying to access support and education for them.”
“Bringing up a child / children with additional needs is the hardest thing I have ever done. I have sacrificed my own health and happiness. There is very little support for our children, so we support them ourselves. More support for our children, better and faster diagnostics and subsequent support would change everything.”
“Parent carers are a distinct kind of carer with limited time and in much need of support and better signposting. I was very lucky to find a long term 1:1 counsellor through a charity who was into initially free and subsequently discounted. I am very lucky to have this support.”
“When I accessed [primary care mental health services] they referred me to Adult Mental Health for my needs. Adult Mental Health would not take me on as they decided I had not accessed enough other counselling services. I will always do my best for my children but is so hard when I myself am broken.”