Cordinated Care for Rare Diseases Focus Group

New research study investigating how care should be coordinated for rare conditions

Are you 18 or over and a patient with a rare or undiagnosed condition?

Are you the parent or carer of a patient with a rare or undiagnosed condition?

Would you like to take part in a focus group to discuss research findings?

COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients and families would like them to be coordinated.

The focus groups will be run by a researcher and made up of a small group of patients and parents/carers. One focus group will be conducted online (11th December 2018) and the other will be conducted face to face in Birmingham (6th February 2019). The purpose of the focus groups will be to develop our understanding of information that is already available about co-ordinated care for rare diseases. The findings of the focus groups will inform the development of a survey which will be sent to patients, carers and health care professionals later in the study. The focus groups will take two hours. If you take part in a face to face focus group, travel expenses and child care costs will be reimbursed.

Who should I contact if I want to take part?

If you would like to take part in one of the focus groups, or you would like to ask further questions, please contact Holly Walton: holly.walton@ucl.ac.uk / 02031083068

Please note: It is possible that not everyone who wants to will be able to take part. We will ask you some basic questions about you and/or the person you care for (e.g. condition, age, location). This is to help us with selecting participants for the study so that, if we cannot manage to include everybody, we will be able to include a broad range of people and conditions. The information you provide will be kept securely and deleted after selection has taken place.

SGA Study News

SGA Research Study

SGA Metformin Study

Was your child born ‘small for dates’?

  • Are they still small for their age?
  • Has their doctor told you they may need growth hormone injections to help them grow?

They might be eligible to join a new study, find out more at:

http://paediatrics.medschl.cam.ac.uk/research/clinical-trials/

or contact:

SGAMetformin@paed.cam.ac.uk

Download the research poster, with more information, below:

SGA Clinic Poster [pdf]

Survey 2018

Child Growth Foundation Survey

We have developed this survey to capture your experiences and satisfaction relating to the support and treatment you are receiving from the staturoty bodies and from the Child Growth Foundation.

By gaining your thoughts and feelings on a number of topics we will be able to deliver the right support to you in the future. It will help us prioritise our spending and enable us to better meet your expectations of us.

The answers you provide will be treated with the strictest confidentiality. The survey should take around ten minutes to complete.

To start the survey click the image to the right.

Travelling this Summer?

Travelling this Summer?

Travelling Tips and Information

With school holidays just around the corner you may be about to travel to places near and far in search of rest, relaxation and a really good time! It is holiday season and so we thought it important to share some advice and travelling tips to help smooth the break. Here are some things to consider:

Health insurance

It’s important to get adequate insurance cover before you travel. You’ll need to find insurance that covers pre-existing conditions. The Pituitary Foundation has a list of insurance companies that deliver policies aimed at people with existing conditions.

Travelling with Medication 

If you are going abroad on holiday it is best to ask your GP or endocrinologist for a letter about the medication and your doses prescribed, that you or your child take. This letter will be helpful should you become unwell and have to see a doctor. It is also useful for you to have this letter whilst going through airport security, in the event that they question the medication. If you have a repeat copy prescription this can also be shown.

If you want to take any sort of medicine with you – either prescribed or bought from a pharmacist – find out if there are any restrictions on taking it in and out of the UK or the country you are visiting. This is particularly important for patients on growth hormone (GH). Ask the relevant Embassy or High Commission or telephone the Home Office for advice.

All of your medication should be labelled with your name and kept with you at all times during your journey.

Finally, always carry medicines in a correctly labelled container, as issued by the pharmacist.

For further useful information, please visit the Gov.UK website.

Flying with Medications

The following is useful advice from Heathrow Airport

You may need to take medications with you when you fly, so talk to your doctor to find out exactly what you need to take. Here are some considerations when taking medications

  • Make sure you take enough for the flight and your time in the destination.
  • Make sure you pack them with you in your hand luggage. Don’t leave liquid medication in the hold because the temperatures could affect it.
  • If you need to take medication in containers over 100 ml, this is possible. However, you will need permission from the airline and airport, and you will need a certificate from your doctor.
  • If you need to take a hypodermic syringe, this should be possible. However, be prepared for special checks at security.
  • Also remember to check any restrictions in the country you are visiting because they may not allow you to take certain medications into the country.
  • Always take a copy of your prescription as well as a letter from your doctor containing details of your medications and condition.

Medications that need to be kept cool

If you have medications that need to be refrigerated, the following are suggestions on how to keep medications cool during travel:

  • Purchase or borrow a small cool bag with two freezer blocks.
  • Before you travel, call your accommodation (hotel, motel, bed and breakfast etc) and ask if they have refrigerators in the rooms or, if not, if one can be hired for your room. If they do not have refrigerators, ask if they have a freezer where they can place your freezer blocks on a rota in order that you can keep your cool bag cool.
  • During travel, place your medication into cool bag with both frozen blocks – the blocks should keep cool for around 12 hours.
  • If you need to use the hotel’s freezer, on arrival, give them one block labelled with your name. Twelve hours later swap the blocks to ensure you continually have a frozen block to use both day and night in the cool bag.
  • For dire emergency, for example, there is no freezer or refrigerator available, wrap the medication in a cold wet flannel and keep in shade. This option is not recommended for the long term.
  • For long haul flights, you can request dry ice packs from cabin crew (they can refuse this request). Dry ice packs will quickly refreeze your ice blocks. It is important to be very careful while handling these packs.
  • Cabin crews may also refrigerate your medications for you on the aircraft (again, they can refuse this request). Be sure it is properly labelled and be certain to retrieve your medications before leaving the plane!

There are growth hormone products that are available that do not need refrigeration – just kept cool – very useful for holidays!

Big Lottery Fund Success

Big Lottery Fund Success

Plans for this year’s Convention are well under way, and thanks to National Lottery players we have almost secured all the funding for it!

The convention takes place from September 28th to 30th, details can be found HERE and there is still time to book. Our successful application to the Big Lottery Fund’s: Awards for All programme means we have once again subsidised the cost of the convention, keeping it as affordable as possible. The event is a wonderful opportunity to hear about latest news and developments, attend information and guidance sessions and spend time with other people who understand what you are going through.

Thank you to the Big Lottery Fund for supporting our work.