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Making sure that Jackie Brown* has the best possible care is the top priority for her family. With Almond Care in place, they are happy that that is what she is receiving.

Jackie, now in her 50s, has the very rare blood condition Kasabach-Merritt Syndrome, in which vascular tumors – caused by the excessive growth of blood vessels – trap and destroy the platelets that are crucial to clotting.

She lives independently in the Midlands but over time her condition has confined her to a wheelchair and during 2014 it became clear that she needed more complex care than her existing live-in care provider was able to provide.

A switch to another care provider started promisingly, with careful planning and preparation for putting the care package into action, but ended after only a couple of weeks. As a result another care company had to be found very quickly and a nurse’s recommendation led to Almond Care, who took over her care in October 2014.

Her sister Teresa* explains: “Although we were a bit wary because of our experience with the other provider, we didn’t have time to look around and had to take what was recommended but Almond Care director Julia Senah and our Almond Care Quality Assurance Manager came to the house and discussed different options for packages.

“Previously, Jackie had had one live-in carer for both day and night but that wasn’t really working. Now Almond Care provide one live-in carer but also provide a further carer daily from 8am-8pm and another carer works a waking night shift, from 8pm-8am.

“Jackie has a small team of regular carers covering day and night shifts alongside her regular live-in carer, which is important, as we didn’t want a succession of different people – she just isn’t well enough.

“The Quality Assurance Manager was our main point of contact and ensured everything ran smoothly by overseeing all the care provided. We feel happy knowing that if there has been a problem it has been resolved quickly and any concerns dealt with.”

Teresa describes the family as “close-knit” and their commitment to Jackie’s well-being includes their acting as part of her support team – Almond Care are on duty for a fortnight and then the family provide her care for her week.

That closeness also means they are very clear about the standards they expect from care providers. Teresa says: “From our point of view, Almond Care’s expectations of what the package should deliver have been pretty much our own expectations and it has been good having someone overseeing things who agrees and doesn’t regard what we are asking for as unreasonable.

“Jackie feels comfortable with her carers and feels comfortable asking for what she needs – and that’s the most important thing.”

* Names changed at client’s request.

The right support at the right time can make a huge difference to someone with complex care needs. That’s something that Hazel Cavanagh knows from first-hand experience, after Almond Care provided round the clock support during the last four months of her husband John’s life.

She says: “The support given by Almond Care helped to extend my husband’s life. They also enabled him to have a good quality of life as he progressed through his illness.”

Almond Care’s support was organised through Clinical Commissioning Groups in Cambridge and Nottingham and began at around the end of June 2014, when a team of carers began training that included sessions within the Royal Hospital for Neuro-disability in London, where John was undergoing rehabilitation following a traumatic brain injury.

When John was discharged a couple of months later Almond Care provided 24/7 care at home until John’s death in December 2014.

The team was responsible for a comprehensive care package for John, who had a tracheostomy, that included personal care, medication administration, clinical observations, such as blood pressure and oxygen levels, passive physiotherapy and providing social and emotional support. It also extended to hospital visits, visits to the local village and ongoing communication with Hazel and other family members about John’s condition, his observations, and any concerns or worries they might have.

Hazel said: “The relationship that I had with the care team, was very good. They learned to trust me and my intimate knowledge of John’s wants and needs, checking with me when they were unsure about something and allowing me to manage decisions such as possible changes to timings of medications, when a doctor was needed, or when an ambulance was to be called.

“The team were with John 24/7 and as he got to know and feel comfortable with them, this enabled him to progress in his illness. Their exceptionally caring and proactive approach to John’s needs meant that he had started to get stronger and was able to do more physical activities.

“The Almond Care staff also saved John’s life on a number of occasions as they were able to notice subtle differences changes in John, alert me and get medical support quickly.

“The personal care given to John enabled him to have less discomfort and maintained his well-being, which contributed to a very ill man being able to stay in his own home for the last few months of his life, surrounded by people who cared, monitored him closely, kept me informed and gave me peace of mind. I would highly recommend the Almond Care team.”

Ondine’s curse gives little away about the extremely rare medical condition it describes. Nor does its formal name of congenital central hypoventilation syndrome, or CCHS.

But the reality is that CCHS is a lifelong and life-threatening disorder that means when the person affected falls asleep, they stop breathing, due to a malfunction of the central nervous system.

“Curse” might sound an accurate description but at 18, Elaine Foster* – one of only around 70 people in the UK with the condition – leads a life very much like that of any other teenager.

She goes to college, has set her sights on a career in animal care, spends time with her group of close friends and enjoys the occasional Saturday night out. The difference is that when she goes to bed, she must be ventilated, with a carer on hand and alert throughout the night in case of any problems.

Until the summer of 2014, Elaine was supported by the NHS but once she turned 18, the responsibility switched to her local authority’s adult services department, with her night-time support provided on their behalf by Almond Care.

Her mum Cathy* is very happy with the transition and Almond Care’s support since then, describing the service as “absolutely brilliant”.

In fact, the system is working so well that Cathy has very little contact with the carers. They arrive at 10pm, monitor Elaine’s positive pressure ventilation throughout the night, then alert Cathy and her husband when they go off duty at 8am the next morning.

Cathy appreciates the way that Almond Care director Julia Senah managed the  taking over of Elaine’s care, including meeting several times with the family ahead of putting Elaine’s package in place, and the way that she is always available by phone.

She adds: “It has been a very smooth transition and Elaine is more than happy with her carers. Long may it continue.”

* Names have been changed at the family’s request.

Central Case Management has a clear focus: ensuring brain injury clients have the support that will help them work towards achieving their own goals and a better quality of life.

The company, based in Duffield, Derbyshire, works with a range of brain injury professionals in creating and delivering bespoke support and rehabilitation to its clients and since 2011 these have included Almond Care.

The two companies first came together when Central Case Management provided brain injury training to Almond Care staff. That initial contact subsequently led to Almond Care providing staff to two Central Case Management brain injury clients, both of whom suffered a traumatic brain injury in road accidents.

Both clients require 24-hour support and their care is complex. One is wheelchair-bound and has care needs including PEG feeding and use of a catheter while the other, while physically mobile, also requires mental health support.

Alongside ongoing clinical care, including medication management and observations, Almond Care’s teams support the clients with day-to-day activities like attending appointments and socialising.

Chloe Walker, the case manager at Central Case Management who oversees the two packages, says: “We have a regular team of four support workers from Almond Care who support the two clients. That kind of consistency is very important for brain injury clients.

“The clients are positive about their carers and they are very much a part of our team. If there ever are any issues, Almond Care director Julia Senah is very good at sorting them out quickly and we would definitely use the company for further care packages.”