Young Adults Fight for NHS Care in Long COVID Battle
Adolescents and young adults suffering from severe symptoms due to long COVID report feeling neglected and having to "fight" for access to National Health Service assistance.
Kaylee, aged 17, was a talented gymnast with aspirations of representing her nation but contracted the illness when she turned 12. She continues to suffer from symptoms such as lightheadedness and difficulty breathing, which have led to her missing school and having to abandon the sport she cherished.
According to the Office for National Statistics, two million individuals in the UK are experiencing long-term effects of Covid-19.
The Welsh government mentioned that they have boosted the financial resources allocated to assist individuals dealing with prolonged health issues caused by the virus.
From Cross Keys in the Caerphilly county, Kaylee distinctly remembers being confined to her bed for three days during her 12th year after experiencing an abrupt bout of dizziness that led to her falling and bumping her head.
She mentioned that doctors originally couldn't determine the reason for her sickness, and she wasn't diagnosed until she turned 13.
She mentioned her symptoms involved "feeling dizzy at times, occasional shortness of breath, a sense of lethargy, discomfort in my chest and ribs, along with experiencing mental cloudiness occasionally."
Kaylee's mother, Sarah, mentioned that the initial mental and physical assistance Kaylee got from the local health board's Post-Covid Recovery service was excellent.
However, she mentioned that Kaylee hadn't visited an NHS specialist doctor in two years.
Sarah stated, "I've attempted to reach out lately but haven't received a reply."
"It's really disappointing, I think [the clinicians] think they did everything they felt they could do - that she's already been offered everything."
Over the last half-decade, Kaylee's parents have covered the costs of specialized oxygen treatment for her in Bristol, a regimen they believe has improved Kaylee's respiratory function and vitality.
"Never did I anticipate that after five years, we would remain in this situation, and I am still uncertain about whether or when she will completely recuperate," stated Sarah.
Sarah stated that she believed a "detailed inquiry" was necessary to determine the origin of long COVID, rather than merely addressing the symptoms.
She pointed out that there's a significant shortage of studies examining its impact on children compared to adults, as well as inadequate support systems for kids.
It seems we have no alternatives left – it has been terrible.
It has been five years, and I continue to witness her suffering, feel distressed as she misses important moments, and constantly worry about how she will cope with what lies ahead.
The Aneurin Bevan health board expressed regret over Kaylee's mother's dissatisfaction with the provided care.
The announcement stated that they would be introducing a symptom management service on April 1st, offering personalized care for patients. The board mentioned that various online resources were already accessible.
"In the last 18 months, we have revamped our services to enhance accessibility and provide prompt assistance for children, parents, caregivers, and supportive adults dealing with long-term effects of COVID-19," stated a representative.
What is long Covid?
Most people who catch Covid feel better within a few days or weeks and most make a full recovery within 12 weeks, according to the NHS .
However, for certain individuals, the symptoms might persist or emerge over an extended period. This condition is referred to as long COVID or post-COVID-19 syndrome.
The frequently reported symptoms include severe fatigue, difficulty breathing, mental cloudiness, irregular heartbeat, lightheadedness, joint discomfort, and muscular soreness.
Official statistics for the number of young individuals suffering from long COVID in Wales do not exist, however, the Welsh government approximates that about 94,000 children and adults are dealing with this condition.
Bethan, 20, from Pontardawe in Neath Port Talbot, was 17 and just beginning sixth-form when she caught Covid in 2021.
She mentioned having all the typical signs of a severe cold, yet despite this, she didn’t improve even after fourteen days.
Bethan, who suffers from asthma, mentioned that she could hardly raise her head off the pillow for several days consecutively. She also noted that this affected her attendance at sixth form.
She was ultimately diagnosed with long COVID, but mentioned that it was an ongoing struggle to obtain assistance. She also noted that due to her age, she found herself caught between adult and pediatric care services.
Thanks to her instructors, Bethan finally earned a spot at college.
She mentioned that her symptoms continued to fluctuate and that she currently considers herself disabled.
She mentioned that she experiences episodes with various symptoms lasting anywhere from a week to two weeks. Alternatively, these symptoms might appear as infrequently as once a day or not at all.
She mentioned that she was resolute in achieving success.
She stated, 'I have always maintained the mindset that I won’t allow it to prevent me from pursuing my goals.'
The Swansea Bay University Health Board expressed deep regret that Bethan felt inadequately supported during her illness.
A representative stated that since Bethan had reached 20 years of age, she could be directed to the health board's long COVID adult clinic through her general practitioner.
The representative further stated that we consistently collect information on treatment efficacy and solicit patient input to assist in our development of upcoming services and transformation of current offerings for tomorrow.
The charity Long Covid Kids has urged the Welsh government to set aside funds specifically for specialized long COVID services.
Setting up a "monitoring system" might also aid in precisely determining the number of individuals impacted in Wales.
A representative stated: "The services that the GPs are directing patients to primarily focus on pediatrics, hence there aren't any specialists well-versed in long COVID, nor physicians capable of piecing together all aspects of this condition."
The Welsh government announced an increase in funding aimed at supporting individuals experiencing prolonged impacts from COVID-19, setting aside £8 million for this purpose, with plans to repeat this allocation.
A representative stated that health boards offer personalized and customized assistance for individuals of all age groups who have long COVID via the Adferiad (Recovery) Program.
The services, which involve multiple professions and focus on communities, have been structured to comply with guidelines provided by the National Institute of Clinical Effectiveness (NICE).
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