Heartlands Adult Cystic Fibrosis Centre Relative Support Group... more

Goings and comings in the CF team.... more

We are launching a competition ...... more

The MHRA today asked people with diabetes to check if they have a specific type of blood glucose meter at home.... more

CF Week 2013

The CF Trust national fundraising and awareness week is taking place from Monday 24th - Sunday 30th June. There will be a fundraising walk around the Botanical Gardens in Birmingham on Sunday 19th May. If you would like to take part, go to www.cftrust.org.uk where you will find more infomation under the 'get involved' tab and events section.

Warmer Weather ? it's time to have more salt

As the weather warms up, you may need more salt to replace sweat losses. Taking more salt in warmer weather and especially if the weather is hot, may help prevent you feeling tired and lethargic. You can take extra salt by; adding it to your food, eating salty foods such as crisps or by taking salt tablets (Slow Sodium 600mg, 4-8 tablets per day taken at regular intervals).

Disabled Student's Allowance (DSA)

Are you hoping to go to university this autumn? Then make sure that you apply for a DSA grant! It's to help with extra costs incurred due to disability or health problems. Parents' income doesn't count & it doesn't have to be paid back! CF students often get help with laptops and other expenses. Ask, at clinic, for our support letter which explains about CF.

Code of Conduct

Our code of conduct aims to create a pleasant and harmonious atmosphere that is considerate to all staff and patients. All patients will be given a copy of the code of conduct on admission, and asked to sign that they agree to the terms of it. To find out more, go to the patients tab where you will be able to read our code of conduct.

Fundraising in 2013

Fundraisers! Are you planning an event in 2013? Has the new year brought new inspiration? If you're hoping to raise funds for our CF Centre, please do get in touch with us. If you've plans in the pipeline, we can provide some publicity! Spread the news via our website - bolster your support and boost your success!

CF TV

We have a number of new films about cystic fibrosis that have been added to our CFTV. Some of these have been produced by people with cystic fibrosis. They are certainly worth viewing, go to CFTV to watch now!

Kalydeco News

We are delighted to relay the news that from 1st January 2013, Ivacaftor (trade name Kalydeco) will be funded by the NHS in England for all patients aged 6 years and over with cystic fibrosis and the G551D mutation.We are awaiting confirmation of how to apply for our remaining patients eligible and will contact them when arrangements are confirmed This is great news for our patients with that particular mutation.

It's FLU JAB TIME again!

Fight the flu this winter! It's really important to protect yourself against it as flu can have a potentially serious effect for people with CF. If you haven't done so already, now's the time to book an appointment with your GP and arrange to get one as soon as possible. As with all vaccinations, we would like to remind you that it's essential to ONLY have it when you are feeling well.

Feedback Wanted

We now have a new facility on the website that will allow you to send us your feedback about our service via email. We are keen to hear from you about all aspects of the service or suggestions on how we can make improvements. Click the Feedback button on the Welcome page to use this facility. We look forward to hearing from you soon.

Research Update

There are currently 4 research studies actively recruiting patients at the West Midlands Adult CF Centre : ARIKACE study, TORPEDO-CF study, PROTEASE study, ACTIVE-CF study. See the CF Centre section for more information or contact the CF team if you are interested in taking part.

Physiotherapists: A message for inpatients

If you are being admitted to ward 26, please bring your nebuliser and all your physiotherapy equipment with you. It would also be very useful to bring some trainers or flat shoes for exercising with the physiotherapist. So please, before you leave home, when you're packing that bag, think physio and make sure you come well prepared.

Have you got a tale to tell ?

Have you a story about yourself that's worth sharing with other patients? Any experiences, good or bad, glad or sad, that might be interesting or useful for others to hear about? Any achievements, celebrations, holidays, special events or just tough times you've got through and learned a lot? We'd love to hear from you - the website needs you!

Inpatient Blood Sugar Monitoring

Are you being admitted to Ward 26? If you want to monitor your blood sugars while you are an inpatient, you will need to bring your own blood testing equipment, including blood testing strips and lancets, as we are unable to supply you with different blood testing strips while you are on the ward.

URGENT: Return of Tobramycin Pumps!

Please, please, please can we remind you to return tobramycin pumps as soon as you finish your IV antibiotics. Many pumps aren't being returned. Please check if you have a pump at home & return it as soon as you can. We often have no pumps in stock, causing delays for other patients due to start treatment. Until pumps are returned we cannot offer them home IV tobramycin!

Our website has details of our CF Centre's facilities and clinics, outpatient and in-patient information, patient stories and factsheets to download. An invaluable resource for all our patients and their relatives, or for anyone simply interested in our CF Centre or wishing to donate to it.

Planning a Holiday ?

The current spell of changeable weather may have resulted in many patients thinking about getting away for a short break or holiday. Many of you may be looking forward to an escape which was planned earlier in the year. Either way, there is always a lot to think about when travelling in the UK or venturing abroad. The check list below has been put together to hopefully make any plans that little bit easier.

Medical approval

Make sure your CF consultant, along with any other consultant you might see, confirms that you are fit to travel.

Arrange a clinic appointment 4 weeks prior to going on holiday as you may need a course of IV antibiotics before you go.

If you require oxygen for a holiday in the UK, contact your oxygen provider and they will arrange this for you. If you are going abroad your oxygen provider will give you the relevant contact telephone numbers so that you can arrange this yourself. There may be a charge incurred.

Make sure you have details of the nearest hospital to where you are staying.

It is advisable to have a travel letter if you are taking medications or a nebuliser through customs, please let Elaine Chapman CF centre Manager know at least 2 weeks before you go and she will be more than happy to provide you with one.

Travel insurance

Never book anything without having first secured a travel insurance policy for pre-existing medical conditions. Many standard policies will not cover the support needed for CF or Transplant patients should anything go wrong.

Do your homework. Good deals vary from month to month but if you make a few phone calls or search online, there will be something out there which meets your needs.

Make sure you have a copy of any policy in your travel documents. Many companies send a policy number by email these days - be sure to print out the complete policy and booklet if available.

Be honest and declare everything.

Medication

Make sure you take more than you need - If possible take an extra weeks worth.

Store all medication in your hand luggage whenever possible. You can stay on holiday if your clothes get mislaid, but it's a quick flight home without your tablets.

If taking insulin be sure to store it properly, especially if flying - More details available from Kirpal 0121 424 3577 or refer to information leaflet on ‘CF diabetes and travel' available in information downloads.

If taking a nebuliser make sure you know the voltage abroad. Many high street shops sell adaptors.

Remember to add salt tablets and sun cream to your daily medication regime.

You will need to apply sun block if you taking ciprofloxacin or doxycycline to prevent sunburn on these medications.

Flying

Airport security is much improved these days, especially when travelling to places like the USA. Therefore it is a good idea to keep all medications in their original packaging.

If having to use oxygen whilst flying, make sure the airline knows your requirements. There may be a charge incurred. Read the CF Trust's advice on oxygen whilst flying.

Get your ‘Fit -to Fly' letter from Elaine. This will list your medications along with stating that you are indeed....Fit-to Fly! Contact Elaine 0121 424 2261.

Documents Check list

Passport!!
ESTA authorisation (USA)
European Health Insurance Card (EHIC)
Travel insurance documents
Fit-to Fly letter
Any email correspondence for bookings, flights etc
Emergency telephone numbers, eg Family, doctors, hospital etc.

If you have any concerns about travelling make sure you speak to any member of the CF Team well in advance of committing to any plans and be sure to look at our Holiday/ Travel articles elsewhere on the website. Click here for more info

Most importantly........have a great time!

Get involved!....Remember...your website needs you!

This is YOUR website! It's been created with the help of patients here so if there's anything that YOU would like to see in it, any ideas about how to improve it, please let us know. YOUR comments and suggestions are most welcome - the more patient input, the better it will be!

We're really keen to get even more of you to contribute, so please keep sending us your stories, photos and videos of special events, celebrations and holidays. Contributions to our newsletter, would also be most welcome! It's produced twice a year - if you've anything that you'd like to have included, please let us know.

We're also looking for a group of patients to take part in a focus group to discuss developing a new information pack for to help younger patients through their transition from paediatric to adult CF care. In addition, we would welcome your views on the clinic touchscreen. It's an interactive information point - you may or may not have noticed it in the corner of clinic! We'd like to find out what information you would find helpful to include on it.