ELC Toolkit – Section 4

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This section is part of the Energy Limiting Conditions Toolkit for nurses and Allied Health Professionals. Click here to access the starting page of the Toolkit.

Section 2 – Understanding Energy Limiting Conditions

Section 3 – Barriers to care: causes, experiences and impacts

Section 4 – Case study: lived experience of care with an ELC

Section 5 – What good care looks like: a guide for health and care practitioners

Section 6 – Making services more accessible

Section 7 – Research, policy and resources

Section 8 – About the toolkit

Section 4 – Case study: lived experience of care with an ELC

This case study is included to illustrate the complexity of living with an ELC and to provide a grounded example of how experiences of care can unfold in practice.

It highlights a wider failure to coordinate care for complex, multi-system illness. It shows why integrated, trauma informed and person-centred approaches matter, including recognising functional impairment, sensory needs, and complex trauma, and responding with respect, continuity, and practical support. It also demonstrates the complexity, and necessity for, the multidisciplinary model of health, and the ways in which the legacy of previous negative healthcare experiences play into that.

The case study has been written by someone with lived experience of an ELC and reflects their personal experiences and perspectives, recognising that every individual’s journey is different – the case study intends to offer authentic insight into a person’s experience that demonstrates real life consequences.

Black and white drawing of figure in the water near a lighthouse.

Image above created by one of our research participants.

It is written for health care professionals including nurses, AHPs, psychotherapists, trainee doctors and other professionals.

4.1 Falling Through the Gaps: A Case Study in Chronic Illness, Diagnostic Overshadowing, and Fragmented Care in the NHS
Sarah (now in her early 40s) has lived for much of her life with a complex and debilitating pattern of symptoms that affect multiple body systems and limit day to day life. She experiences sensory sensitivities, persistent and widespread physical pain, severe fatigue and worsening after exertion, disrupted sleep and decades long insomnia, hormonal fluctuations, and debilitating migraines. She also describes longstanding weakness and a feeling of “floppiness” in her posture since childhood, as though she is “finding it hard to hold herself together physically”. Her childhood illnesses were repeatedly overlooked and continue to be as an adult. Alongside this, she has lived with chronic anxiety and complex trauma most of her life. Chronically disrupted sleep makes mornings especially difficult with body aches and stiffness. Eating early is also difficult. Sarah has experienced a lot of racism and outcasting from a young age at her school as one of a handful of children of colour in the area. A child of migrants parents and grandparents who experienced their own traumas and the consequences of colonisation. From early childhood, the regular illnesses she experienced were not recognised or joined up in any way. Her records show migraines from the age of 5. While migraines have been less frequent during periods of her life, they have increased again in recent years and have also changed. Previously they would pass once she fell asleep. Now they can wake her with stabbing eye pain and throbbing head pain. She previously used sumatriptan and paracetamol, (and was put on various different depression and anxiety medications from childhood) but neither stopped or prevented attacks. She was later started on a higher dose of propranolol which caused a worsening of fatigue. She is now on a lesser mg which mostly controls the attacks. There is a clear hormonal link, with migraines still occurring during changes in her menstrual cycle. More recently she has reported early perimenopause, but this has not been taken seriously in consultations and has been dismissed. Alongside the physical burden, Sarah experiences significant sensory issues that are debilitating and life impacting. Noise, crowds, busy spaces, bright lighting, and the general overload of travel can be enough to trigger deterioration, resulting in extreme fatigue crashes and other symptoms such as pressure in the feet, eyes and full body compression. This has real consequences for her: ability to work, have a social life, even take a break or visit somewhere different for a few hours, attend appointments and to access services that require long journeys. There is also likely underlying neurodiversity which has not been assessed or supported. Shame, stigma, a fear of not being believed and the sheer difficulty of navigating another pathway while already unwell have all been barriers. The result is that sensory overwhelm and neurocognitive strain add another layer to her disabilities and reduce her capacity to cope with repeated assessments, repeated retelling, and poorly coordinated care. Despite clear and persistent advocacy, her care has been marked by gaps in continuity and coordination, and repeated experiences of diagnostic overshadowing. Appointments have often been brief and dismissive. She has faced inappropriate mental health referrals in place of joined up medical investigation. She has also been casually recommended medication by a practitioner who was not appropriately qualified to do so and who had not taken any history. Where she has identified appropriate trauma informed options, she has not been supported to access them and instead faced barrier after barrier. Services have been suggested that require travel into busy cities, even though long journeys and sensory overload can directly worsen her symptoms and leave her more unwell. This points to a disconnect between how services are arranged and the lived reality of people whose illness makes travel and overstimulation a clinical risk, not a minor inconvenience. It also highlights the lack of local provision for those who cannot make those journeys. Her health has affected every part of life, including independence, relationships, emotional wellbeing, and the ability to work consistently or at the level she would like. She is not able to sustain the work she wants to do to make a difference in this area, even though she has continued to advocate for herself and to seek answers. There is an irony to all this. Sarah is not uninformed. She has achieved considerable academic and professional successes, including a doctorate. Her research in health disparities and inequalities, and the links between early developmental trauma and chronic illness, are informed by both lived experience and academic research. Indeed, it was her own experience of being repeatedly dismissed within medical systems, alongside her need to make sense of her symptoms, that pushed her into research and practice in this area. However, she is limited in the progress she can make due to constantly struggling and suffering without appropriate support. Sarah notes medical professionals are often surprised at her expertise and assume limited education. Paradoxically, when learning more about her she is then seen as someone who is ‘intelligent’ therefore can manage and should have the answers or “know better”. A frustrating situation for her to be in.
*Some details have been changed to preserve anonymity.

4.1 Falling Through the Gaps:
A Case Study in Chronic Illness, Diagnostic Overshadowing, and Fragmented Care in the NHS

Sarah (now in her early 40s) has lived for much of her life with a complex and debilitating pattern of symptoms that affect multiple body systems and limit day to day life. She experiences sensory sensitivities, persistent and widespread physical pain, severe fatigue and worsening after exertion, disrupted sleep and decades long insomnia, hormonal fluctuations, and debilitating migraines. She also describes longstanding weakness and a feeling of “floppiness” in her posture since childhood, as though she is “finding it hard to hold herself together physically”. Her childhood illnesses were repeatedly overlooked and continue to be as an adult. Alongside this, she has lived with chronic anxiety and complex trauma most of her life. Chronically disrupted sleep makes mornings especially difficult with body aches and stiffness. Eating early is also difficult.

Sarah has experienced a lot of racism and outcasting from a young age at her school as one of a handful of children of colour in the area. A child of migrants parents and grandparents who experienced their own traumas and the consequences of colonisation.

From early childhood, the regular illnesses she experienced were not recognised or joined up in any way. Her records show migraines from the age of 5. While migraines have been less frequent during periods of her life, they have increased again in recent years and have also changed. Previously they would pass once she fell asleep. Now they can wake her with stabbing eye pain and throbbing head pain. She previously used sumatriptan and paracetamol, (and was put on various different depression and anxiety medications from childhood) but neither stopped or prevented attacks. She was later started on a higher dose of propranolol which caused a worsening of fatigue. She is now on a lesser mg which mostly controls the attacks.

There is a clear hormonal link, with migraines still occurring during changes in her menstrual cycle. More recently she has reported early perimenopause, but this has not been taken seriously in consultations and has been dismissed. Alongside the physical burden, Sarah experiences significant sensory issues that are debilitating and life impacting. Noise, crowds, busy spaces, bright lighting, and the general overload of travel can be enough to trigger deterioration, resulting in extreme fatigue crashes and other symptoms such as pressure in the feet, eyes and full body compression. This has real consequences for her: ability to work, have a social life, even take a break or visit somewhere different for a few hours, attend appointments and to access services that require long journeys.

There is also likely underlying neurodiversity which has not been assessed or supported. Shame, stigma, a fear of not being believed and the sheer difficulty of navigating another pathway while already unwell have all been barriers. The result is that sensory overwhelm and neurocognitive strain add another layer to her disabilities and reduce her capacity to cope with repeated assessments, repeated retelling, and poorly coordinated care. Despite clear and persistent advocacy, her care has been marked by gaps in continuity and coordination, and repeated experiences of diagnostic overshadowing. Appointments have often been brief and dismissive. She has faced inappropriate mental health referrals in place of joined up medical investigation. She has also been casually recommended medication by a practitioner who was not appropriately qualified to do so and who had not taken any history.

Where she has identified appropriate trauma informed options, she has not been supported to access them and instead faced barrier after barrier. Services have been suggested that require travel into busy cities, even though long journeys and sensory overload can directly worsen her symptoms and leave her more unwell.

This points to a disconnect between how services are arranged and the lived reality of people whose illness makes travel and overstimulation a clinical risk, not a minor inconvenience. It also highlights the lack of local provision for those who cannot make those journeys. Her health has affected every part of life, including independence, relationships, emotional wellbeing, and the ability to work consistently or at the level she would like. She is not able to sustain the work she wants to do to make a difference in this area, even though she has continued to advocate for herself and to seek answers.

There is an irony to all this. Sarah is not uninformed. She has achieved considerable academic and professional successes, including a doctorate. Her research in health disparities and inequalities, and the links between early developmental trauma and chronic illness, are informed by both lived experience and academic research. Indeed, it was her own experience of being repeatedly dismissed within medical systems, alongside her need to make sense of her symptoms, that pushed her into research and practice in this area. However, she is limited in the progress she can make due to constantly struggling and suffering without appropriate support. Sarah notes medical professionals are often surprised at her expertise and assume limited education. Paradoxically, when learning more about her she is then seen as someone who is ‘intelligent’ therefore can manage and should have the answers or “know better”. A frustrating situation for her to be in.

*Some details have been changed to preserve anonymity.

4.2 Timeline of key events in recent years

2021

Sarah sends a detailed letter to her GP practice outlining chronic symptoms, physical decline, and lack of progress including information about what happens to her so that the system can be more informed of how to help during crisis moments. No response is received.

Key events: repeated consultations, limited joined-up care

Pain management referrals: Sarah is passed between several hospitals, each stating they are not a pain management service and can only offer pregabalin. Appointments are often extremely brief (sometimes around five minutes), with little or no history taken and no attempt to join up symptoms. She is repeatedly told she “looks well”. One consultant says, “you don’t look like you have fibromyalgia”, despite a formal diagnosis made around ten years earlier by a recognised specialist.
Hypermobility / Ehlers Danlos suggested, then dropped: Hypermobility and Ehlers Danlos syndrome are mentioned by consultants, but no clear follow-up occurs. At a separate shoulder tear appointment, Sarah raises her diagnosed hypermobility and asks about connections. The clinician looks up a test online during the appointment, asks her to do a few movements, then dismisses the possibility based on an on-the-spot score. Sarah leaves feeling confused by mixed messages and increasingly despondent.
Specialist service consultant input: Limited annual support is offered, but advice is non-specific and does not translate into a coordinated plan. Appointments can be 12-14 months apart and seem more like a chit-chat than addressing the very real issue of living with multiple chronic illnesses.

2024

First ever major cycle change: period is 2 months late with subsequent cycles being varying in length between cycles and duration. Onset of perimenopause?

2025

A&E attendance due to deterioration, dizzy spells, late period again, and overwhelming sensations. She is crying and distraught. She usually avoids hospital environments due to sensory overload, but attends on GP advice because she feels so unwell. She is told to expect a two-week follow-up, and the discharge letter states likely “undiagnosed complex PTSD and Autism” but a year later and no action has been taken.
Sarah receives an unexpected call from a mental health service. The caller (unknown male staff member) cannot explain the reason for the call or how the referral was made and suggests medication without knowing her medical history.
Sarah writes to the GP practice detailing:

concerns about the unexplained mental health call
a dismissive five-minute pain management appointment
lack of follow-up after A&E
ongoing complex, interacting symptoms
a clear request for joined-up, trauma-informed care
requests for referrals (including potential trauma informed support/care, endocrine specialists, genetic testing and neurology and for a named care coordinator and improved continuity. Anything that may help getting to the bottom of her symptoms and lead to a plan for improvement/a way forward).
Sarah experiences a severe migraine lasting 28 days. She struggles to access her GP and feels dismissed by reception staff. She takes a loan to see a private GP, who offers propranolol and extensive referrals. She cannot afford ongoing private care, returns to the NHS, and submits a formal complaint to her GP practice. She is then offered a meeting.

A number of meetings take place with the GP and some referrals are made. Some services state a 16-week wait simply to review the referral. G.P is kind and apologetic, seems the systemic issues are causing barriers all round.
No meaningful change in ongoing care. Sarah remains managing primarily with propranolol and would like a proper review of how long she should be on it and the wider impact on fatigue and metabolism. A GP seen as a one-off, states there is “no harm” in taking it for life, which Sarah experiences as concerning, overly dismissive and not sufficiently individualised.
GP review amid significant life stress. Sarah describes feeling unable to fulfil her potential and frustrated by not being able to manage even small activities or follow through with ideas and initiatives. She is experiencing grief and burnout. Autism assessment is discussed, but the referral pathway is unclear and nothing is progressed at this stage.

2026

Sarah finds herself in the same scenario as early 2025 and many times before: she put in a request for an appointment to her surgery, was told someone will be in touch and has followed up 3 times with no appointment still arranged a month later. Sarah is too exhausted to keep trying and feels like just giving up on getting any help.

4.3 Background and assessment information

Presenting concerns

Longstanding multi-system symptoms with worsening day to day functioning
Severe fatigue, worse after exertion, with reduced stamina and “crashes”
Widespread pain (notably pressure/pain in feet and eyes and full body compression feeling), with established fibromyalgia
Migraine increasing in frequency and changing pattern, sometimes waking her with stabbing eye pain and throbbing headache, triggered hormonally, by night time jaw clenching during sleep or crying.
Marked sleep disruption and insomnia, no refreshing sleep and with body aches and stiffness in the mornings.
Hormonal symptoms and major cycle disruption, with concern about early perimenopause
Sensory overload (noise, crowds, bright lights) that worsens symptoms and makes travel/appointments difficult

Health history

Migraines since early childhood (age 5)
Fibromyalgia diagnosed around 10 years ago by a recognised specialist
Chronic fatigue syndrome type symptoms with significant functional impact
Hypermobility previously diagnosed or suspected, with inconsistent clinical responses and no clear follow-up
Chronic anxiety since childhood linked to racist bullying and persistent sense of unsafety
Possible neurodiversity with significant sensory issues, not assessed due to stigma and access barriers
No surgeries reported

Menstrual history

Migraines linked to hormonal changes across the cycle
February 2024: period 2 months late (first major change)
April 2025: late period again alongside deterioration and dizziness
Concern about early perimenopause, dismissed
Symptoms fluctuate with cycle changes and feel closely linked to overall health

Drug history

Sumatriptan previously used for migraine, now less effective
Paracetamol used for pain/migraine, limited benefit for prevention
Propranolol for migraine prevention (higher dose worsened fatigue, now lowered with partial control)
Pregabalin repeatedly offered by pain services as a standard option despite not being effective in patient’s experience.
Prescribed Seroxat, and other antidepressants and Roaccutane in childhood with limited monitoring.

Social history

Academic Research Scientist
Symptoms limit ability to work consistently and reduce independence and quality of life
Avoids busy environments (hospitals/shops/social gatherings/family events) due to sensory overload and symptom worsening
Long journeys, especially into towns/cities, can trigger deterioration and restrict access to services
Ongoing emotional impact, including grief and frustration, and exhaustion from repeated self-advocacy

Ideas

Symptoms feel connected and multi-system, not isolated issues
Possible overlap of migraine disorder, fibromyalgia, chronic fatigue, hormones/perimenopause, and hypermobility/connective tissue issues
Thinks long-term stress and trauma may be relevant, but does not want symptoms reduced to mental health
Wonders if neurodiversity and sensory processing differences, especially with age/hormonal change, are worsening overwhelm and overall difficulties

Concerns

Ongoing decline without a clear plan or consistent follow-up
Not being believed, or being told she “looks well” instead of being properly assessed
Hormonal change/perimenopause being overlooked or dismissed
Long-term propranolol use without proper review, including fatigue/metabolic impact
Fragmented care, repeated retelling, and inappropriate referral/medication suggestions without full history

Expectations

Respectful listening and a holistic assessment that joins up symptoms over time
Clear follow-up, written plans, and coordinated care (ideally a named clinician/care coordinator)
Appropriate referrals where indicated (hormone/endocrine; neurology, hypermobility/connective tissue; other relevant investigations)
Medication review with shared decision making and attention to side effects
Reasonable adjustments for sensory needs (predictable communication, quieter settings where possible, avoiding unnecessary travel)

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