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Amanda Matthews is trying to raise £12,000 to buy a specialised wheelchair to allow her daughter, Phoebe, to have a better quality of life. Please read her story and donate to the campaign.

 

phoebe

 

“Phoebe is our very soon to be 16 year old daughter (her birthday is the 16th September) who has cerebral Palsy spastic quadraplegic which affects all her limbs, she is unable to stand, walk, use her arms to feed herself or write or sit unaided. She does have a wicked sense of humour and a very gentle and loving heart that loves life and loves socialising. She started out in life with a massive fight on her hands as she was born 16 weeks early weighing only 1lb 10oz and we were told on two occasions that she wasn’t going to make it but Phoebe being Phoebe was and still is a fighter.

We had the opportunity to try this fab powerchair from a company called “easyrise” that reclines, sits and stands up. Phoebe loved it!! it was so great to see the smile on her face she just lit up when she was able to stand in the chair!! We were at Monkeyworld in Dorset a few years ago and we had to stand back from the glass enclosures so that Phoebe could see the monkeys because she was in her wheelchair, and she wasn’t tall enough to see through the glass close up. The amount of people that stood right in front of her with their noses up against the glass was infuriating as well as heartbreaking when Phoebe would say “oww I can’t see!”. With a chair like this it would mean she could stand up the same as everyone else and see what she wanted to see and when she wanted to see it. When you are at a wheelchair level there is so much that you can’t see as well as being ignored, but this chair gives social inclusion and a chance for Phoebe to be seen and noticed.

It also has a practical use as standing is a very important part of Phoebes physio programme she does have a standing frame at home which we hoist her in and out of but she only goes in it once a day this helps prevent hip displacements and helps keep muscles and bones strong and prevents operations

which we want to avoid as much as possible. This chair would allow more frequent standing as often and as long as Phoebe wanted. The chair also has the capability of lifting just Phoebe’s legs up to straighten them again another great physio move for stretching her legs which we currently have to do with leg gaitors. This chair also lays flat which would be of great help when we are out and we need to use the disabled toilet for cares.

This is a great chair however it costs more than we can afford. We can’t get help through the NHS to fund this chair as it is too expensive. Which is why we have decided to try this route of funding to see if we can get some or all of the fees to pay for it and allow Phoebe to “stand up to her disabililty”.”

Donate to the campaign…

KOS

A large part of the population suffers from nasal congestion and a condition called rhinitis, which makes breathing difficult. Rhinitis is an inflammation of the nasal membranes caused by an allergic or non-allergic reaction or by hormones, infections, occupational or other triggering factors.

It is a very common disease that results in significant costs for medical treatment, impairs breathing and disrupts sleep, causing fatigue and reduced productivity at work and at school. Treatments offered are antihistamines or surgical procedures or a combination of both, which are costly, may have disadvantages and do not guarantee appropriate relief.

The Snore Centre at 150 Harley Street nows offer patients with non-allergic rhinitis a simple twentyminute, non-invasive outpatient KOS neuromodulation treatment without surgery or pharmaceuticals, with almost instant relief or within a few days for those responding.

Ergoflex-Snoring-Map-of-the-UK

Scotland has more snorers than anywhere else in the UK a recent sleep study has found. The study was conducted by Ergoflex UK- a memory foam mattress company- who have created a map highlighting the regions with the most snores.

A total of 2,438 Britons aged 18 and over, all of whom stated that they were in a co-habiting relationship were quizzed about their sleeping patterns, habits and those of their partner. Scotland topped the list of snorers with 61% saying either they or their partner snored. The East of England was second with 55%, West Midlands third with 52% and North East was the least snoring region with 9%.

The respondents were asked a series of questions such as: ‘Does your partner ever wake you up in the night?’ Almost three quarters of respondents, 72%, stated ‘yes’, with ‘their snoring’ (42%) and ‘moving around’ (26%) topping the list of ways they did so.

The study also found that 13% of respondents admitted that at one point or another they had woken themselves up snoring.

Mr Michael Oko FRCS(ORL-HNS), Consultant ENT Surgeon of 150 Harley Street, commented:

“Sleep takes up between a quarter and a third of our lives and serves to refresh and restore our bodies, yet snoring is damaging for so many. Severe snoring is not only socially disruptive to partners, often leading to couples being forced to sleep in separate rooms at night, it can also signal more severe sleep disorders such as Obstructive Sleep Apnoea with which patients stop breathing periodically at night, waking up grumpy and tired with early morning headaches. If you or your partner snore so badly that you cannot even share the same room, you need to see your doctor and get it checked out.”

Jed MacEwan, Managing Director of Ergoflex said: “Snoring is commonly seen as amusing, but in reality it’s anything but funny.

“Living with a partner who regularly snores of course jeopardises your own sleep quality, and experiencing disrupted sleep over a sustained period of time isn’t ideal for your health and wellbeing. For the snorer themselves it could well be a symptom of more serious problems, so simply ‘accepting’ the condition could be a dangerous decision. We’d implore anyone who suffers from snoring to take it very seriously, for their own good as well as their partner’s.”

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The Spalding Guardian has an article on the increase in outpatients attending clinics at Johnson Hsopital.

“Already in the five years that the Outpatients Department at Johnson Community Hospital has been open there has been a dramatic increase in the services that it offers and in the number of patients who attend.

“When the department opened in 2009, we saw approximately 53,239 patients through the doors. In 2014 to date, we have already seen 11,743 more patients than by the end of 2009 and are set to see on average 2,000 more patients each month by the end of the year.

“During this time, our team at Lincolnshire Community Health Services NHS Trust has worked with other health and care providers in the county to develop the range of clinics and services available locally. By doing so, we have been able to help reduce the distance patients with certain conditions have to travel for their appointments.

“Next year we are pleased to be welcoming and expanding clinics run by our colleagues at United Lincolnshire Hospitals NHS Trust.

“Onel clinic increasing available appointments in the department is Sleep Apnoea. The great advantage for patients with this clinic increase overall is that some clinics will run on a Saturday, allowing a lot more flexibility for patients to attend out of work time. However, as always, we do ask that patients let us know if they are unable to attend any of their appointments so that it can be offered to someone else.”

Read the article in the Spalding Guardian

 

The One Show: Professor Keevil

Follow the above link to see Professor Keevil talking about the benefits of copper for tackling Hospital Aquired Infections.

A new study in the journal Sleep Medicine shows that cognitive ability, attention span and mood are all impacted negatively from interrupted sleep — to a similar extent as only getting four hours of sleep.

“The sleep of many parents is often disrupted by external sources such as a crying baby demanding care during the night. Doctors on call, who may receive several phone calls a night, also experience disruptions,” study researcher Avi Sadeh, a professor at Tel Aviv University’s School of Psychological Sciences, explained in a statement. “These night wakings could be relatively short — only five to ten minutes — but they disrupt the natural sleep rhythm.”

For the study, Sadeh and other researchers had 61 healthy adults between ages 20 and 29, 40 of whom were women, undergo two nights of sleep. One night, the participants had a normal night’s sleep, but the other night, they were assigned to either have restricted sleep (just four hours of sleep for the night) or induced night-wakings (where they were woken up four times over an eight-hour period in bed). For the participants assigned to the night-wakings group, the wakings were each about 15 minutes and required them to do a short task on a computer before being allowed to go back to sleep.

Researchers monitored sleep with sleep diaries and actigraphy. The next morning of each of the nights, participants underwent testing and answered questionnaires to gauge their mood, alertness and attention.

All of the participants — those who got restricted sleep, and those woken up during the night — experienced attention problems and more confusion, fatigue and depression as a result of their bad sleep. Researchers noted that even though the study only examined the effects of one night of bad sleep, “we know that these effects accumulate and therefore the functional price new parents — who awaken three to ten times a night for months on end — pay for common infant sleep disturbance is enormous,” Sadeh said in the statement.

Source: Huffington Post

The Irish Sleep Apnoea Trust have produced this list of handy tips for flying with your CPAP machine:

1. It is a good idea to get a ‘Letter of Medical Necessity’ from your sleep clinic (it states your condition and the pressure setting of your CPAP machine). In the event of loss or breakdown, it will prove invaluable should you need to replace your machine abroad.

2. Always ensure that you clear your CPAP equipment for air travel as soon as possible after booking your flight.

3. Follow instructions from The Special Assistance Department of your airline.

4. Always pack a suitable plug adaptor and extension cable. Check this site for details.

5. It’s a good opportunity to have your machine serviced and replace any worn parts (hose/filter) and mask.

6. Check any insurance issues with your supplier.

7. When you approach the security check area, make sure to tell security staff that you are carrying a medical device. You MAY have to remove it from the bag (unlikely), but it will be placed in a separate tray for scanning. Follow their instructions.

8. On rare occasions, security staff MAY ask to swab your CPAP machine for explosives. Should this happen, you can ask to have it swabbed privately in a room away from other passengers. This process involved removing the CPAP machine from the carry bag and lightly swabbing a small area of it. It should take no longer than a minute or two. You are entitled to ask security staff to replace their gloves with clean ones.

9. Once on board, try to place your CPAP bag beside a bulkhead in the overhead locker, with your other case beside it (protecting it). If you are unable to place the machine safely in the overhead locker, either place it on the floor under the seat in front of you or alternatively ask one of the flight attendants to place it in one of their lockers (NOT IN THE HOLD)

REMEMBER, problems or difficulties travelling with CPAP are more the exception than the rule.
If your equipment has received advance clearance, you are unlikely to experience any problems.

IF YOUR CPAP MACHINE HAS NOT RECEIVED PRIOR CLEARANCE, IT IS UNLIKELY THAT YOU WILL BE ALLOWED CARRY IT ON BOARD AS ‘ADDITIONAL LUGGAGE’.

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