Lincolnshire Summaries

A Parent's Experience with Functional Neurological Disorder (FND)

The speaker recounts her experiences as a parent of two children diagnosed with Functional Neurological Disorder (FND). The journey began in 2017 when her then 8-year-old daughter started exhibiting symptoms and was diagnosed in 2018. The initial period was marked by frequent trips to A&E, where they were met with disbelief and accusations that her daughter was feigning illness to avoid school. This was particularly hurtful as her daughter loved school and it provided a sense of normality.

Her daughter's condition rapidly deteriorated, progressing from difficulty walking to non-epileptic seizures, stuttering, stomach issues, and tremors. Despite seeing a neurologist relatively quickly, a definitive diagnosis remained elusive. Initially, serial casts were applied to her legs, but these were later removed due to concerns about the underlying issue. Eventually, a neurologist acknowledged the reality of her pain and symptoms, prescribing medication that led to some improvement, including the return of movement in her toes after months of immobility.

However, in January, her daughter experienced a prolonged non-epileptic seizure, resulting in quadriplegia. This was a devastating setback. The speaker recalls the lack of support and equipment available, leaving her daughter on a mattress on the living room floor for months. A therapist's advice to reassure her daughter was met with the parent's frustration, given the uncertainty of the situation.

In September 2019, her daughter began to regain some movement and communication abilities. Plans were made for her to return to hospital school in January 2020, but even the limited engagement proved too taxing. Then, in September 2020, her second child was also diagnosed with FND.

Challenges and Dismissal

The speaker describes the immense challenges of raising two children with FND, a condition that is often misunderstood and dismissed. When her second child began showing symptoms, a GP advised a trip to A&E. There, the medical team questioned whether he was using drugs, reflecting a lack of understanding and empathy. A paediatrician suggested the child might be jealous of the attention his sister was receiving, a comment the speaker found deeply inappropriate. While this consultant later became a valuable member of their care team, his initial reaction highlights the ignorance and insensitivity they often encountered.

The speaker emphasises the importance of medical professionals acknowledging the limits of their knowledge and avoiding accusatory or dismissive behaviour. She stresses the emotional toll of constantly having to advocate for her children and feeling disbelieved.

The Importance of Supportive Professionals and Hope

Despite the difficulties, the speaker expresses gratitude for the handful of professionals who are genuinely committed to helping her children. These individuals are equally frustrated by the lack of resources and understanding surrounding FND, but they persist in seeking solutions and offering support. They are willing to collaborate, research, and think outside the box, even at unconventional hours.

The speaker recounts a recent physiotherapy session where her daughter bravely endured a painful standing frame exercise. She also mentions her reluctance to use splints again, due to the trauma associated with the earlier serial casts. The speaker acknowledges the difficult decisions she faces and the constant worry about her children's future, particularly regarding who will care for them if something happens to her.

Impact on Personal Life and the Future

The speaker describes her life as "scary" and "lonely," with little opportunity for personal time or social interaction. Her world revolves around her children's needs and celebrating small victories. Simple things like taking a shower or going out for coffee are fraught with anxiety. The future is uncertain, and she fears her daughter may never be able to live independently or achieve her dream of attending university.

Despite the challenges, the speaker maintains a sense of humour and draws strength from her children's resilience. She emphasizes the importance of hope, both for herself and her children, and calls for greater understanding and support from medical professionals and the wider community. She believes that even when hope seems lost, professionals must strive to find it and offer it to families affected by FND.

Sue, a retired nurse, discusses her extensive volunteering activities at her local church and in the wider community. She has been retired for approximately two years and sought meaningful ways to contribute her time and skills.

Volunteering Activities

Sue is involved in numerous initiatives, including:

<ul>
<li>The warm room on Mondays, providing a safe and warm space for people.</li>
<li>A toddler group on Thursdays.</li>
<li>A loss and bereavement group.</li>
<li>The Beacon Cafe, specifically for service people, veterans, and emergency services personnel, leveraging her nursing background.</li>
<li>Christian festivals.</li>
</ul>

She also serves as a pastoral care coordinator within the church.

Motivation for Volunteering

Sue's primary motivation for volunteering stems from her Christian faith. She believes in following Jesus's example by helping others and contributing to the community. She emphasises the importance of an outward-looking church that extends its support beyond its own members.

Volunteering also benefits her own health and wellbeing, providing a sense of purpose and fulfillment. While she appreciates the positive feedback she receives, she is not motivated by compliments but by the desire to help others.

Street Pastors

Sue highlights her long-standing involvement with Street Pastors as a particularly rewarding experience. Street Pastors is a nationwide organisation that originated in London to support communities and assist emergency services. In Lincoln, where Sue volunteers, the Street Pastors operate mainly on Saturday nights, offering assistance to anyone in need. This includes providing drinks, helping people get home safely, offering basic first aid, and listening to people's concerns. They also support door staff and collaborate with the police. Prayer pastors are an integral part of the team, providing spiritual support and contributing to a more peaceful environment.

St Michael's Waddington Wellbeing Hub

Sue discusses her involvement with the Wellbeing Hub at St Michael's, Waddington. A key initiative is the warm space, which was established in response to rising heating costs. Initially a joint effort with Freedom Church, it now operates independently, offering a warm and welcoming environment for people to gather. Activities such as board games and seated exercises are provided, but people are also welcome to simply relax and chat. The aim is to provide a safe space, warmth, food, and solitude for the community.

Advice for Others

Sue encourages others considering starting community initiatives to seek support from organisations like the volunteer bureau or from existing hubs like St Michael's. She emphasises the importance of trying new ideas, even if initial participation is low, as projects can grow over time. She stresses that action is more valuable than simply talking about ideas.

Challenges in a Rural Area

Sue acknowledges the challenges of operating in a rural area like Waddington. Transport is a significant issue, as some people lack the means to access the hub. Publicity is also a challenge, as it can be difficult to reach everyone in the community, despite efforts to distribute leaflets and utilise social media. Word of mouth remains an important tool for spreading awareness.

Jane's Volunteering Experience at St Michael's Waddington Wellbeing Hub

Jane discusses her role as a volunteer within the community outreach programme at St Michael's Church. She is also a licenced lay minister, but her primary focus is community engagement.

Jane emphasises the importance of building social capital, which she describes as connecting with other people. This connection is crucial for both mental and physical well-being, as isolation can negatively impact a person's overall health. She recounts her lifelong enjoyment of listening to people's stories, stemming from her childhood and continuing through her career. Although now retired from paid employment, she considers herself a full-time volunteer, actively involved in numerous groups.

She highlights that even simple acts like baking a jacket potato or making a cup of coffee provide opportunities to listen to people and offer them a space to offload, which she considers invaluable. Jane expresses her confusion as to why more people don't engage in such activities.

Jane believes that volunteering is a win-win situation, with volunteers gaining more than they contribute. She acknowledges that the pressures of daily life can make people feel they lack the time to volunteer, but even an hour a month can make a significant difference. While she finds the necessary paperwork and training courses somewhat off-putting, she understands their importance in ensuring safety and well-being. She encourages people to push past these initial hurdles and experience the rewards of volunteering.

When asked about her favourite volunteering role, Jane identifies the warm welcome on Mondays. She helped establish this initiative and feels a sense of ownership, although she has now passed the management to others. She enjoys seeing the positive impact it has on the community.

The warm room provides a regular meeting place for people to connect, whether for a short visit or an extended stay. Friendships are formed, and attendees receive food, making it a popular and beneficial resource.

Jane, with her background in the food industry, believes that hospitality, particularly food, is key to bringing people together and serving the community. Sharing a simple meal and being served by others can be a special experience, especially for those who live alone. She emphasises the importance of sharing their good fortune with others through the church's funding.

Regarding Waddington being a rural area, Jane believes it helps because most attendees live within walking distance. However, people also travel from further afield, even from Lincoln, to participate. Ultimately, she believes that the need for human connection transcends geographical location.

Jane concludes by encouraging others to volunteer, even with limited time. She suggests that it's a great way to meet new people and potentially find additional support in other areas of life.

Elsie shares her experiences with volunteering at St Michael's and with Dementia Adventures. She initially became involved after caring for her husband, Wally, who had Alzheimer's, which led to her feeling quite isolated.

Volunteering at St Michael's
Elsie describes her volunteering at St Michael's and the wellbeing hub as "absolutely brilliant" and says it gives her purpose in life. She enjoys all aspects of it, from serving jacket potatoes and teas to playing games.

Dementia Adventures
Elsie discusses Dementia Adventures, a relatively new and small group. She highlights the importance of talking to carers of people with dementia, swapping experiences, and sharing helpful tips. She emphasises the importance of communicating with those with dementia in a way they can understand, noting the rewarding experience of seeing a "flash of recognition" when they engage.

Elsie believes her personal experiences are hugely helpful in her work with Dementia Adventures. She feels there isn't enough provision for people with dementia and their carers, recalling her own feelings of loneliness and isolation. While a memory nurse visited, it was only once a month, and her husband became increasingly antisocial, isolating both of them.

She reflects that Dementia Adventures would have been useful earlier, but her husband's unwillingness to engage and his discomfort with others caring for him prevented her from attending. She also mentions the stigma associated with dementia, which needs to be addressed.

When asked about advice for those "higher up the chain," Elsie feels she isn't in a position to offer any, acknowledging the diverse circumstances and progression of dementia. She suggests that perhaps a walking group, which they both could have attended, might have been beneficial.

In closing, Elsie reiterates that she gets a great deal out of volunteering at St Michael's, finding it "just brilliant".

The speaker recounts the onset of their Functional Neurological Disorder (FND) in 2023. It began with sudden shaking, immobility, and loss of speech at the end of a normal workday.

After being taken to the hospital, they underwent various assessments, including CAT scans and MRIs. Initially, a stroke was suspected, but within 24 hours, they were diagnosed with FND. They spent five days in the hospital for monitoring, particularly due to leg weakness requiring them to relearn to walk. Their speech returned after approximately two weeks.

The speaker expresses feeling overwhelmed and confused by the diagnosis, as they were unfamiliar with FND. They received limited information upon discharge, leaving them to grapple with their "new life" without adequate support.

Challenges and Support

One of the main challenges was the lack of information and support available after leaving the hospital. They encountered closed doors and a lack of understanding from general practitioners regarding FND. For six months, they conducted their own research until they connected with someone who had experience with FND, which opened doors to social care, social prescribing, and rehabilitation.

An incident involving a lanyard indicating their FND highlights the importance of awareness and understanding. The speaker was laughed at and left unattended after experiencing symptoms, underscoring the need for people to read and understand such indicators.

Symptoms and Daily Life

The speaker details various symptoms they experience, including:
<ul>
<li>Paralysis (affecting legs or all four limbs)</li>
<li>Tics (both physical and verbal)</li>
<li>Loss of speech</li>
<li>Blackouts</li>
<li>Dropping</li>
<li>Non-epileptic seizures</li>
<li>Dissociations</li>
</ul>

They emphasise the need to take each day as it comes, as their condition is unpredictable. Planning is limited to a week in advance due to potential flare-ups.

Impact on Family and Lifestyle

The speaker's partner has become their main carer, reducing his work hours to provide support. He assists with daily tasks such as dressing and showering, and often has to help them up from the floor. The speaker now relies on aids like a walking stick, walker, or wheelchair, and has had to leave their job.

Measures have been put in place to ensure their son is looked after, even when they are not experiencing a flare-up. The speaker experienced isolation, being confined to the house and often separated from family due to mobility issues. Moving to a bungalow has significantly improved their quality of life.

Coping Mechanisms and Future Goals

The speaker has learned to manage their symptoms better, recognising early signs and avoiding panic. They find that taking time in a calm environment helps them ground themselves. They also appreciate the increased patience and understanding from others.

They use a footprint device with an SOS button and GPS tracker, which has given them the confidence to go out more. Their goals include returning to work, spending more time outdoors, and enjoying family holidays.

John recounts his experiences with social care following the death of his mother in 2018, just before her 93rd birthday. His father, married to his mother for 65 years, struggled emotionally after her passing. John and his two brothers initially tried to care for their father at home to avoid him going into a care home, a situation they were keen to avoid due to negative stories they had heard.

One brother moved in, and John and the other brother provided respite care. However, their father began to have falls, leading to several A&E visits. In 2022, after a particularly confusing episode, they agreed, with medical and social care advice, that a professional care environment was necessary for his comfort and safety. He was admitted to Elton Court in Lincoln, which John praises highly, noting the wonderful staff and the positive impact it had on his father's well-being. It also provided relief for the family.

Financial Assessment and Challenges

John's father was self-funding his care initially, using his savings and the proceeds from the eventual sale of his property. John consulted Lincolnshire County Council's adult care website to understand available financial support. He submitted a financial assessment form in August 2022 when his father's capital approached £30,000, anticipating support as his capital reached the limits set out in the Care Act.

Despite his father's savings rapidly depleting due to significant care home fees, John faced considerable delays and a lack of communication regarding the financial assessment outcome. Even as his father's savings fell below both the upper (£22,250) and lower (£14,000) capital limits, he received no outcome or support. In desperation, he contacted a social worker who arranged for Lincolnshire County Council to directly pay the care home under a deferred payment agreement.

The stress of managing his father's finances was compounded by unexpected expenses, such as a boiler breakdown at his father's empty property, which John had to manage with dwindling resources. He shielded his father from these financial worries.

Systemic Issues and Bureaucracy

John found the adult social care system to be slow, with poor communication and a lack of coordination. He described the staff as nice but the process as stressful. Tragically, his father passed away almost exactly a year ago, and nearly two years after submitting the financial assessment form, the outcome remained unknown. Although John stopped actively chasing the assessment once direct payments began, the lack of communication was appalling.

He identified several areas for improvement, including timescales, communication, and management oversight. The promised timescales for various processes were consistently inaccurate, leading to increased frustration and unnecessary contact with the already overburdened social care staff. He felt that better communication would benefit everyone involved.

John, with his experience in dealing with bureaucracy and paperwork, was better equipped than many to navigate the system. He questioned how others without his experience would cope. He provided feedback to social care staff, highlighting the lack of management oversight and the need for a more holistic approach.

Involvement in "Our Shared Agreement"

John became involved with "Our Shared Agreement," a collaborative effort between Lincolnshire County Council, the NHS, and various third-sector organisations, aimed at improving health and wellbeing services. He volunteered his "lived experience" to help build a better relationship between the health and care system and the public. He remains involved in this work, which he believes is crucial, although he acknowledges that significant improvements will take years.

He highlighted the lack of support offered and the need for more accessible information. The policy document he received was lengthy and difficult to understand. He noted that a review of the strategy, policy, and leaflets is underway, which is a positive sign.

John also pointed out inefficiencies in the process, such as the initial rejection of bank statements submitted in CSV format, a common online banking format. He believes that updating these processes is necessary.

Positive Aspects and Encouragement

Despite the challenges, John acknowledged positive aspects, including the kindness of the adult care staff, the excellent care home, and the good care his father received in A&E during a late-night visit. He is encouraged by the passion and commitment of those involved in "Our Shared Agreement" to improve the system. He believes that involving people with lived experience in co-producing solutions is essential for meaningful change.

He emphasises that organisations will ultimately be judged on their actions and results. His father lived to 98, was happy in the care home, and was well-looked after, which is what mattered most. John is thankful for that.

Jess recounts her experience of giving birth prematurely. She was originally scheduled for a caesarean section in New York around January 3rd or 4th, at 38 weeks gestation. However, her placenta abrupted 7 weeks early while she was visiting friends.

Initially unaware of the severity, Jess intended to take a bath, but her husband urged her to call the hospital in Lincoln. The hospital staff, sensing urgency in her voice, instructed her to go to York immediately. While initially unsure if she was in labour, her waters broke in the car, confirming it.

After giving birth, Jess was able to hold her baby, Mac, briefly before he was taken to the NICU. Jess then had to go to theatre, as she was unaware her placenta had abrupted. When she was able to visit Mac, he was in an incubator, as expected, and appeared peaceful despite having many tubes. She was not able to hold him that day, but she and her husband were allowed to touch him.

A specialised team from Nottingham transferred Mac, creating what Jess describes as a "travelling ward" with a dedicated nurse. The handover at York Hospital was thorough. Jess was initially intimidated by the size of the equipment required for the transfer, but the nurse reassured her that it contained everything Mac might need during the journey.

Jess highlights the open environment in Lincoln, which allowed her to connect with other parents. Mac spent a total of 17 days in the NICU between York and Lincoln, which Jess considers a relatively short time. Upon arrival in Lincoln, Mac was in a "hot pot" to help him stabilise his temperature. The initial steps towards discharge involved him being able to maintain his body temperature without a knitted hat and then with the cot switched off, which he achieved within a few days.

Mac was tube fed from birth, but the goal was to get Jess and Mac home quickly, as she had two older children and lived nearby. Her milk supply came in quickly, which facilitated the transition.

Jane, an age-friendly communities officer in Lincolnshire, discusses her work and reflections on the experiences of older adults ageing without children (AWOCs). Her role involves working with older residents and organisations to improve age-friendliness in various aspects of community life, including public spaces, services, and businesses.

The AWOC Experience

The term AWOC encompasses individuals who, by choice or circumstance, have not had children. This includes those who may have children with special needs who are unable to provide support, or those who have lost contact with their children. Jane's awareness of this issue was heightened during the COVID-19 pandemic.

During the pandemic in 2020, Jane was approached by Trish, an AWOC, who felt particularly isolated due to media focus on family reunions and grandparents hugging grandchildren. This highlighted the lack of consideration for those without children or close family. Jane contrasts this with her own experience growing up with unmarried, childless aunts who were supported by her family, illustrating how family support is often taken for granted.

Trish's situation, as an only child, widowed, and without close relatives, underscored the challenges faced by AWOCs, especially during times of crisis. Prior to COVID, Trish was active in her community, but the pandemic exacerbated her isolation. This led Jane to realise that society's health and social care system relies on a triangle of support: the individual, the family, and the state, with AWOCs often lacking the crucial family component.

In response, Jane supported Trish in developing a blog and establishing an online AWOC social group to share experiences and advice.

Current Initiatives and Future Considerations

In East Lindsey, an AWOC support group was initially established but later dissolved as members transitioned to other friendship groups. Jane and her colleagues at Lincoln University are working to raise awareness of the experiences of adults ageing alone, including plans for a public lecture.

Key themes include the grief of wanting children but being unable to have them, and the frustration of those who consciously chose not to have children but find the system doesn't adequately support them. There is a national UK Ageing Without Children group that lobbies the government and provides support, including a Facebook group.

The number of AWOCs is expected to increase due to factors such as choice, declining fertility rates, and women delaying childbearing. This necessitates that public and voluntary sector services consider the growing need for support for older adults without informal family care.

Jane emphasises the importance of planning for the future, particularly for those without children or close family. This includes considering who will act as next of kin, power of attorney, and advocate in later life. Organisations like the Cinnamon Trust can provide support for pet care during hospital stays.

The discussion concludes with a call to consider the unique challenges faced by AWOCs and the importance of planning for their future care and support.

Harry, a father of two girls aged 4 and 1, recounts his experience accessing healthcare for his eldest daughter when she was quite ill. He initially attended their local hospital, but it lacked the necessary facilities.

They were then referred to Lincoln County Hospital. Harry notes that due to the closure of local hospitals, the A&amp;E at Lincoln County Hospital is often <em>overwhelmed</em>, leading to long delays and a challenging experience for parents.

He highlights the difficulty of coping with these delays, especially when arriving unprepared due to the urgent nature of the referral. Parents, regardless of whether they are mothers or fathers, are expected to manage the situation and keep their children entertained with limited facilities available.

Harry states that he wasn't treated differently as a father compared to the mothers present. Once they were admitted to the Rainforest Ward at Lincoln Hospital, he found the staff to be very helpful. His daughter received quick and effective treatment, and their stay was short. He describes this part of the experience as reasonably positive.

Thomas recounts his experience accessing healthcare for his first child, born in 2022. At eight weeks old, they took their son to A&amp;E due to unexplained bruising on his foot.

Safeguarding Protocols and Hospital Stay
Because the child was classified as immobile, the hospital initiated safeguarding protocols. This involved a four-night hospital stay for Thomas's wife, who was breastfeeding, with Thomas visiting daily to provide support.

Thomas describes feeling questioned about his status as the child's father, despite his obvious role and his wife's presence. He also recalls a cannula being inserted into his son's hand without being used for any purpose. Despite his repeated requests to a nurse, it was not removed until after multiple conversations with different healthcare professionals.

Thomas felt a lack of patient-centred care and experienced what he perceived as judgement and questioning.

Social Worker Involvement and Diagnosis
A social worker became involved, initially closing the case after an assessment. However, they later requested a home visit to examine the baby changing unit and ask further questions. The social worker ultimately stated they had no concerns.

The bruising was eventually attributed to a low vitamin K level, despite the child receiving injections at birth. It was also discovered that the baby had been banging his foot against the baby changing unit. While the process identified and addressed the vitamin deficiency, Thomas found the experience frustrating.

Frustration and Concerns
Despite acknowledging the necessity of due diligence, Thomas expresses frustration with the time and resources spent on their case, especially as new parents. His primary concern was whether children genuinely in need of help might be overlooked due to the focus on their situation.

He questions the decision-making and lack of listening, particularly towards him as a father, feeling unheard and scrutinised during a vulnerable time early in his parenting journey.

Thomas, a father of two boys (soon to be 3 years old and 5 months old), shares his experiences accessing healthcare on behalf of his children. He and his wife were fortunate to have a fantastic community midwife, who was also a friend from their running community. She provided support and encouragement for them to remain physically active during pregnancy, which was particularly validating for his wife, who ran almost until her due dates.

After the birth of their second son, they were visited by several community midwives, including their friend. Thomas felt that some of the other community midwives, who didn't know him, seemed <em>unsure of his presence</em> and perhaps underestimated his knowledge of his wife's pregnancy and labour. However, after conversation and sharing his involvement, they became more understanding.

Thomas also observed that some health visitors seemed unsure of his role. He recognised their primary focus was the wellbeing of his wife and baby, but he felt that their body language and the way they directed questions suggested a lack of interest in his wellbeing as a father. He emphasises this was a slight observation and not a major concern.

Having had a month of paternity leave for both children, Thomas was able to support his wife and sons extensively. He acknowledges that not all fathers have this opportunity and that it could be challenging for dads who are not asked about their own wellbeing, especially if they are back at work when health visitors and community midwives visit. He noticed this more with his second son than his first.

Thomas concludes by mentioning other encounters with health and care professionals that made him question whether there was any interest or concern for his wellbeing as a father.

This is an interview with Clare, a 56-year-old woman who is training for the 2025 London Marathon to raise money for Lymphoma Action. She is nearly four years out from completing treatment for non-Hodgkin's lymphoma.

Background and Diagnosis
Clare has a husband and three grown-up sons. Her family is actively involved in raising money for Lymphoma Action. She previously ran the London Marathon 11 years ago, but this time it's under very different circumstances due to her cancer diagnosis.

Her youngest son, Michael, ran the London Marathon in 2023 and also ran from John O'Groats to Land's End via the Three Peaks, setting a fastest known time of 19 days and a couple of hours, also to raise awareness for Lymphoma Action. Michael's achievements inspired Clare to run again.

Clare enjoyed running before her cancer diagnosis, finding it a way to cope when her mother was ill with cancer. After her diagnosis in 2020, she initially feared she wouldn't be able to run again. After completing chemotherapy, she was relieved to be able to run even a short distance. Running is important for her mental health.

Fighting Fit and Community
Clare participates in the "Fighting Fit" 5K run at Belton House in Grantham. After moving to Lincolnshire for a fresh start post-treatment, she wanted to meet people and found the event advertised in the Grantham Journal. She was initially nervous but found the group welcoming and supportive. The group has helped her regain confidence and enjoy running again.

While she enjoys catching up with people at the monthly Fighting Fit meetings, work commitments prevent her from participating in other connected groups. She appreciates bumping into people from the group in town. She believes more people should join, but understands the initial apprehension some may feel.

Impact on Health and Resilience
Being part of the Fighting Fit group and training for the marathon has positively impacted Clare's physical and mental health, making her feel more positive and resilient. She feels privileged to be in remission and appreciates the understanding and strength she gains from being with others who have experienced cancer.

She has also joined Grantham Run Club, expanding her social circle beyond cancer-related activities. She doesn't feel the need to disclose her cancer diagnosis unless it comes up in conversation, preferring to be seen simply as "Claire."

Fundraising for Lymphoma Action
Clare is running for Lymphoma Action. Her family has already raised over £11,000 through various challenges, largely due to Michael's efforts. She emphasises that any donation, large or small, is greatly appreciated. Lymphoma is the 5th most common cancer, with someone diagnosed every 28 minutes, and there are over 60 different types.

Clare knew little about blood cancer before her diagnosis. Lymphoma Action provided crucial support, especially during the COVID-19 pandemic when she had to attend chemotherapy appointments alone. They offered knowledge, literature, and a closed Facebook support group where she could ask questions and connect with others. She also had a "buddy" through Lymphoma Action, someone with a similar type of lymphoma, whom she could call or text for support.

Future Plans
After the London Marathon in April, Clare plans to continue running if her legs allow. She wants to travel overseas and run in different cities, starting with somewhere like Palma in Spain. She is considering a half marathon as her maximum distance. Her goal is to have the confidence to travel and explore new places through running.

The interviewer expresses admiration for Clare's inspirational efforts and wishes her good luck for the marathon, hoping she raises plenty of money and enjoys the experience.

Eunice shares her experiences as a carer for her mother, who has dementia. Initially, her mother's dementia went undiagnosed for five years, with medical professionals focusing on her heart condition. This condition was exacerbated because she forgot to take her heart medication due to the dementia.

Diagnosis and Initial Support
Once the dementia was recognised, there was a significant change in Eunice's mother's behaviour and wellbeing. The family decided to have carers come in to administer medication and ensure she could continue living at home, which was her wish despite being 85. Eunice emphasises that dementia is more than just forgetting simple tasks; it affects recognition and can cause fear and confusion.

The family was referred to Witham Court, which specialises in vulnerable older people's issues, including mental health and dementia. A doctor advised Eunice not to question or correct her mother, a difficult instruction given their lifelong relationship. Witham Court offered counselling and information about local groups and activities.

Challenges of Balancing Work and Care
Eunice highlights the challenge of attending these activities, as they are typically scheduled during working hours. With the increasing pension age, she still has five years before retirement, making it difficult to provide full-time care. She expresses concern about the future of dementia care, questioning who will look after patients as the population ages and fewer family members are available due to work commitments. Eunice wants to avoid her mother ending up in a care home and hopes for more flexible facilities that cater to working carers.

Ideal Support for Carers
Eunice suggests that activities could be offered in the evenings or on weekends to accommodate working carers. She proposes simple social events, such as shared meals in a restaurant, where carers can connect and share experiences. She feels isolated and believes meeting other carers would provide valuable support and reassurance.

Support Services and Family Involvement
Eunice was offered telephone counselling but felt it placed too much burden on the counsellor. Instead, she chose to involve her family more directly. Once she communicated her struggles, her siblings offered practical help, which she found more beneficial than emotional support alone.

Systemic Issues and Power of Attorney
Eunice discusses the importance of obtaining power of attorney to manage the financial and health affairs of a person with dementia. However, she faces ongoing issues with her mother's medical practice, where staff repeatedly fail to recognise her power of attorney status and insist on speaking directly to her mother. This requires her to explain her role repeatedly, wasting time and causing frustration. She believes medical records should clearly indicate when a patient has dementia and that communication should be directed to the designated family member.

In summary, Eunice's experience highlights the emotional, practical, and systemic challenges of caring for a parent with dementia, particularly while balancing work and family responsibilities. She emphasises the need for more flexible support services, better communication within the medical system, and increased awareness of the impact of dementia on both patients and their carers.