Tag: #curefordiabetes

Diabetes Blog Weeek 2016 – The Healthcare Experience

 

I’ve been very fortunate to have had very good healthcare, throughout my time with diabetes.  I first attended Saint Mary’s Children’s Hospital for my diabetes care, after my diagnosis, until I was 18 years old (and considered an adult).  I then began to attend The Manchester Diabetes Clinic, which was a very difficult transition for me, it was all new and up until that point I only really saw younger children and kids in their early teens just like me (at the time). I was now with patients who ranged from 18 upwards and of course every time I’d go for my appointments it just seemed like I was the only one in my age group there. (At the time it would have been nice to get to know more of the newly transitioned diabetic patients). Initially, it was a very daunting transition and I was accustomed to the children’s hospital and  the people and it felt like a place where I could be at ease. I had to quickly get use to this new setting in the adult’s clinic, this meant dealing with receptionist who weren’t particularly friendly and then dealing with several different (and new) people. Towards the end of my time at the children’s hospital, I was attending appointments alone (without my mother). However, my first appointment at the adults clinic, I had to really pluck up the courage to attend the appointment alone. (It was all new and scary for me)

 The adults clinic used a team approach to treat its patients. There were;

The doctors, some good and would listen and take you through your results and some bad who lectured you and joked about diabetes. I’ve experienced both of these types of doctors. However, they are there to give specialist care and advice the patients. Recently I found a very good doctor.

Then there are the nurses who are solely there to take blood samples, weight and measure patients, check your blood pressure levels and test urine samples.  They are friendly and do their jobs well.

The diabetes specialist nurses (DSN) for me have always played a huge role in supporting me, educating me and no matter what, they have always made time for me. I’ve always been fortunate enough to have direct contact with my DSN, which in some case meant I had their numbers.  On many occasions they’ve even made time for me during their lunch breaks and during packed schedules. They are the most caring and understanding of people and I’ve come to realise that they have really dedicated their time to diabetes and the people it affects. They know all about the latest technologies and in some case are even better versed than the doctors. They truly know how to connect with the patient. For me, I can always guarantee a very good appointment when I’m down to see a DSN.

The National Health Service

So here in the UK, for those who don’t know our health care system is known as, THE NHS (National Health Service). You can read more about it here.

The NHS, helps to pay and take care of people like me with diabetes and other chronic illnesses. All treatment is free, all medication is free and all diabetes related technology is free (except things like sensors but the majority of things are still free).

However, recently the NHS has been squeezed beyond its means and in the long run may not cater to all the needs of diabetic patients like myself. There may come a time when I may have to pay for my insulin again (like I used to when I was first diagnosed) or even turn to private care.

Turning to  private care

There are many benefits to going into private care such as: being able to arrange better times for appointments, better access to consultants and more time spent on you. Nevertheless, there are also disadvantages to private healthcare, first and foremost, the costs involved in being able to have specialist diabetes care will be staggering. Unless your employer will cover you for this care, it would become very costly indeed. Medical insurance, may not cover everything you currently receive on the NHS, you would have to make sure you know exactly what it covers you for. I’ve heard from some of my American diabetic friends, about times when they’ve finished test strips and even insulin and contacted their health providers and been told that they should have enough to last them till the end of the month. That’s a frightening prospect and so we’d have a lot to consider.

Being able to make appointments isn’t as easy as it used to be. I think the increase in people who suffer from diabetes is possibly starting to put a strain on diabetes care in the UK. This was discussed in an article about the cost of diabetes in Norfolk.

A new report states that by 2035, the NHS will be spending a whopping 16.9 billion a year on treating patients.

Recently, I was given an appointment to see the diabetes consultant, however it was during a timewhen I was going to be travelling (JULY 2015). As soon as a received this appointment I let them know I wouldn’t be able to make the appointment. So the lady I spoke to said, she’d look to see when the next available appointment would be.  So I thought, well it won’t be too far away and thought she’d give me a slot the following month. She then said, the next appointment isn’t until March 25th 2016, which completely blew my mind. Waiting times are increasing, which means not being able to get the care you need.

‘The cost of diabetes to the NHS is over £1.5m an hour or 10% of the NHS budget for England and Wales. This equates to over £25,000 being spent on diabetes every minute.’

I’m fearful of the direction diabetes care may go in. However, whatever the outcome I will have to adjust and find the best options for myself and my diabetes, as I always have.

Amina xx

Guest Post: Introducing Dr Joan St John


I’d like to introduce Dr Joan St John. She is a GP / Diabetes Specialist. She is the lead for diabetes in a practice in Brent, UK. Dr Joan also has a crucial role working with Diabetes UK as a Clinical Champion.

As a GP, I have been interested in Diabetes for many years and this has been for a number of reasons: I work in an area where there are thousands of people living with the effects of Diabetes on a daily basis, I have seen how it can affect individuals, families and communities and I am passionate about educating people to live healthier lives. I try to do this whenever I can, so this might be in the GP Practice, within my role in a local diabetes service and especially in my role as a Diabetes UK Clinical Champion. 

It’s about ‘Education, Education, Education’ and this could involve the person in front of me in the consulting room and their family member, or giving talks to community groups and also being involved in the education of healthcare Professionals.

I work in a Practice that has over 1,000 patients living with Diabetes. In our area, because of the communities that live there, more than 90% of the people affected by Diabetes have Type 2 Diabetes and less than 10% have Type 1 Diabetes.

The voluntary Clinical Champions role that I do for Diabetes UK seemed like a great opportunity to work with others to try to further improve the quality of care provided to people with Diabetes. The work has involved developing resources for people with Diabetes, giving talks to local groups and education events for healthcare professionals.


As someone who has lived with diabetes for 21 years, I’ve had the opportunity to have been in the care of many diabetes specialist.  I’ve had mostly good experiences but also some very bad ones.You can read about my experiences with good and bad doctors here.

What do you think are the qualities one should possess, when dealing with a diabetic patient? And how do you ensure continuity, when you have new GP’s in your clinic?

I think the qualities one should possess when dealing with a diabetic patient, are those that are required when dealing with any patient

  • A good pair of ears to listen with! Because I believe first and foremost it is about a conversation and dialogue between the patient and the healthcare professional.
  • Specialist knowledge is important, but although every healthcare Professional should have basic knowledge, realistically, not every healthcare professional could, or would have specialist knowledge. However, the important things are that they know where to seek the specialist knowledge, or direct the patient to a specialist for specialist care

Most GP Practices try to ensure continuity by asking Patients to wherever possible, see the same Doctor for the same, or an on-going problem. In terms of standardising care, we try to ensure that the care provided is standardised, by providing training in Diabetes to new GPs or healthcare professionals in our Surgery or Clinic.

What sort of care do new patients recieve?

It would depend on what type of Diabetes you have. Care will inevitably continue throughout your life-long journey with Diabetes, but the first steps of care will be different for the two different types of Diabetes. In brief,

If you have Type 1 Diabetes then you will need to be referred urgently for specialist care to start on Insulin. With Type 1 Diabetes your body is no longer producing Insulin and you need Insulin to survive. Following this you will need to have advice about the how to manage and live healthily with your Type 1 Diabetes and insulin treatment.

Type 2 Diabetes on the other hand usually develops slowly over a number of years. It can creep up on someone so that they don’t realise that the tiredness, infections, rashes, frequent urination or change in vision, might be due to the development of Diabetes. With Type 2 Diabetes the first steps would be to explain what it is and how it has developed. We would aim to ensure that you had some structured advice and education about how to manage the condition and advice about treatment.

With both types people will need on-going advice about the condition and treatment required, monitoring of the condition and support.

What advice do you have for people or parents of children, who have recently been diagnosed?

Do not be downhearted!

There are lots of people who live healthily with this condition and there is a lot of help available. Healthcare professionals provide some of this, but given that most of the time the person with Diabetes is the one managing their condition, in a year they may spend about 3hrs with a healthcare professional out of the 8,757hours that they have to manage the condition themselves! So Amina, blogs like yours that provide peer advice, or other social media platforms can be really helpful. There are a number of local and national Charities providing help and advice for people with both forms of Diabetes and Diabetes UK run ‘living with Diabetes days’ and many other forms of support either with online, telephone carelines, or leaflets that People of all ages can find helpful.

Some of the important aspects, that I’ve learnt about managing my diabetes are, the routine blood testing, eating healthily and exercising. These are all very essential, when managing the condition. However, another important aspect of managing this condition, is being able to psychologically deal with all the challenge’s one may encounter.

What’s support is there for the psychological and emotional impact of a new diagnosis/ongoing condition?

I am pleased to say that the psychological impact of how receiving the diagnosis, and also living with this condition affects People is becoming more recognised and acknowledged by healthcare Professionals. As a result more healthcare Professionals are receiving training in how to help someone living with Diabetes make changes that the individual themselves identifies as important to them, to enable them to live more healthily with this condition.

In addition, it is the case that more diabetes services are enlisting the help of psychologists within their teams to support and enable people living with Diabetes to deal with the challenges they face on a day to day basis.

What suggestions or advice do you have for someone who has a family history of diabetes but hasn’t yet been diagnosed?

‘Prevention, Prevention, Prevention’

This is my other passion within the field of Diabetes. I know how important it is to spread the knowledge about how to prevent and avoid developing Type 2 Diabetes because there is a lot of evidence to show that this can be avoided or the onset delayed. Currently in the UK there are about 3million People living with Diabetes, but it is predicted that there could be more than 5million people at risk of developing Type 2 Diabetes. Having a family history of Diabetes means that your risk of developing Diabetes is increased, this is more the case with Type 2 Diabetes but there is also some increased risk of developing it with a family history of Type 1 Diabetes.

There are some exciting developments in the NHS, in that a national Diabetes prevention programme is being developed. This will be the first National diabetes prevention programme anywhere in the World. I back this initiative, as my experience has shown me that people would welcome not only knowing that they are at risk, but also receiving advice about how to avoid, or delay the development of this condition.

I hope this has given you a flavour of what I’m doing and what I’m about. Hopefully, you will invite me back another time so we can talk more about the Prevention, new developments and the management of Diabetes.

Thank you so much for asking me to be a guest on your blog Amina. Wishing you and your readers, All the best.

Dr Joan St John

GP with special interest in Diabetes and Diabetes UK Clinical Champion.


Thank you so much for taking the time to share with us your knowledge and experiences with treating diabetes and working within the diabetes community. I look forward to the second installment, where we can learn more about prevention, new developments and diabetes management.

Amina xx

Let them in!

How do you even begin to explain to your children, what diabetes is? It’s extremely important for them to know, but how much is enough?

My eldest has always been curious about my diabetes and all the technology I am so lucky to have. Isasmiling

He has many interesting questions;

“Mami, How’s does my body know how to produce insulin and yours doesn’t?
“What is Insulin?”
“What does insulin do?”
“When your sugar goes too high, what’s happening inside your body?”
“How does my body know when to stop giving me insulin, when I’ve eaten something?”

Which really helps me explain diabetes better and with ease. I try my best to answer his questions, as simply as I possibly can. Confusion and worry is the last thing you want, especially when you’re trying to enlighten a 6 year old about diabetes. Now I’ve come to think about it, I wouldn’t want to confuse anyone. There’s already enough confusion when it comes diabetes.

It’s not an easy job, but who said it was going to be? The fact that he is even asking, shows me that he has an interest in what is happening with me, me, his mother.

The way I look at it is, his questions are an opening, an opportunity for me to show him this side of me. He’s at that age, where he questions everything. He wants to know more. The short answer isn’t good enough. He wants to know every last detail. However, I still approach the ‘diabetes’ subject in a gentle way.

He’s observed me countless times changing my insert and knows that when I prick my finger, I’m in fact checking my sugar level. He’ll watch and wait for the numbers, close his eyes and say, “I really hope it’s a good number mami.” (Heart break) He now also knows that I’m looking for the best number range to appear on the screen of my BG meter.

What truly amazed me the other day, was when I was having a hypo. I made mention that I was feeling hungry, so he asked me if I wanted him to get my BG meter so I could test my level. So I said, “Yes ok”. I pricked my finger, applied the blood to the strip and he wait to see what it read. It was 4.2 and most likely on its way down, considering the way I was starting to feel. Before I could even get up, he’d ran to the kitchen and brought back a box of juice from my goody draw and said, “Here you go mami.”

Recently, he asked me if he could test his BG level, which totally blew me away. He is a very sensitive soul and extremely squeamish when it comes to cuts and blood, so I was shocked that he even asked. Of course, I completely jumped on this opportunity to explain to him what was required to test a BG level. Then, I asked him if he was ready he said, yes. I pricked him, he flinched a little bit and then smiled. We quickly put the blood on the test strip and he waited with excitement to see what numbers would appear.

Isabgtesting

I praised him for being such a brave boy and he responded with, “mami, I don’t know how you do this every day.” I smiled at him, trying not to cry up a storm and I just explained to him that it was something that I had to do. Just like sleeping and eating, are the things we all need to do. He replied with, “but this is harder and you’re very brave mami.” (Heartbreak)

 

Now my 2 year old, as young as that might seem has also started to develop a very basic understanding of me having to always check my BG levels and change my insert. From the moment she was born, she’s been observing me, pricking my fingers and most likely hearing the familiar beeping sounds, being emitted from my pump.Untitled-3

Her favourite kiddie show is doc Mc stuffin’s and there’s a theme song. “Time for your check-up”. How do I explain this, she’s a child, who plays a doctor who fixes broken toys by finding a diagnosis. Yes I watch it too hahaha!

Moving on……

This morning, she ran to find my BG meter and reminded me, that I needed to do have a check-up. I laughed! She stood there with a huge smile on her face, while waiting eagerly for me to do it. Usually, when she sees blood she’ll say, “Ouch!” However, this time she just watched. Another thing she has taken to doing is, asking me if I’ve done a check-up when were sat down to a meal. When this happened for the first time, I realised that she had made the connection between me eating and testing my BG.

See already her understanding is developing!

They both amaze me because they aren’t frightened to be around my diabetes. It’s become quite normal for them to see me change my insert or test my BG. They have the understanding that it is a part of me and I think that they are alright with that. As they mature, they’ll develop a further understanding and in turn they will have a better understanding of my daily lifestyle.

isaandsusu

Word of advice….

If your children are asking you about your diabetes, don’t be afraid to explain it to them. Be open and honest with them, let them in. You’re important to them, if not one of the most important things in their lives. Even if they aren’t asking questions, you can always start by mentioning little things, giving them snippets of your life.

diabetesluvones

Although, this is an experience about me and my family, this can be related to anyone in any relationship. If they are asking questions, answer them as simply as you can. Once you’ve opened that door of conversation, the questions will come thick and fast. But don’t panic! Don’t give too much detail at once and scare them to death. Stay positive when expressing things to them, which will allow them to absorb the information with confidence and know that things are ok with you. Diabetes awareness starts at home. Just think the knowledge you pass on to your loved ones, could potentially help another person in the future.

Please comment below and let me know your stories and how you’ve explained ‘diabetes’ to your loved ones?

Amina xx