Bloodwork at the hospital- January 15, 2021

I came to the Community Blood Lab this morning and I had been told on the phone that I could walk in, but they actually preferred that people phone for appointments. Anyway, they let me in and took my form. The place was somewhat busy, but everyone was masked and distanced appropriately. After waiting for a while, I was called in and the tech was very quick at finding a vein and drawing five vials of blood. The labwork should be back Monday and then I'll know if anything is actually up.

Trip to Richmond Road Diagnostic and Treatment Centre in Calgary - January 14, 2021

The appointment was set for 8 a.m., so I woke at 6:45 a.m. and was at the building itself shortly after 7:30 a.m.. There were COVID screeners just inside the building and I quickly passed the screening before making my way upstairs to the appropriate area. I first met with a nurse and got my blood pressure and weight taken. I also admitted I was nervous about the physical because I had never had a pelvic while conscious or felt it. For my procedures, I was either unconscious or had a spinal block. The nurse was understanding and I got to talk with Dr. Robert first before anything was actually done. The physiotherapist was also there and the two of them felt different parts of my body before they had me lie down so that Dr. Robert could do the pelvic. It was a painful process that make me feel like my insides were being gutted and she ultimately determined that the endometriosis was under control, but that my muscles were tight. Dr. Robert also ordered some bloodwork, though, to make sure she didn't miss anything. I also got a referral to a psychologist to discuss my pain and a kinesiologist and on top of all that, I got a perscription for a new medication to help with pain. A 4th medication...at 33 years old. I am turning into a walking pharmacy and I have just barely touched middle age. How horrifying.

After that appointment was done, I went and saw the kinesiologist. She was very nice and taught me some exercises related to posture and breathing and also told me to do more walking for smaller intervals throughout the week. 

Reflections - January 13, 2021

Seeking any sort of medical treatment, let alone constant medical treatment, during COVID is really burdensome. I never thought I'd have to utilize the medical system so heavily during a global pandemic, but here I am. I guess this is part of the refinement plan God has for me. I just have to trust in the plan God has for me and keep pushing forward to deal with what is and what may yet come in terms of my health journey. God will be with me every step of the way and I know that he will make my burdens bearable.

Another shot, another medication - December 30, 2020

 I got in to the actual appointment rather quickly and Dr. Topping gave me my shot and then put me back on the Estradot to help with the hot flashes. We also discussed the appointments on January 14th.

Personalized Care Group - NHS Education - Week 4 - December 5, 2020

Personalized Care for people with Complex health needs

What does personalised care look like for people with an on-going physical or mental health condition? https://www.longtermplan.nhs.uk/

Video: What is supported self-management?

Supported self-management (also called SSM for short) happens when people with long-term health conditions are supported to develop the knowledge, skills, confidence and support they need to manage their conditions effectively and in the context of their everyday life. Ultimately, it is about empowering people to have choice and control over their personal care planning.

There are four main parts to supported self-management:

1. Patient Activation Measure (PAM)

Sometimes your GP or healthcare professional uses a questionnaire (as a tool) to find out what you already know about your health condition and how confident you are to manage it.

The Patient Activation Measure gives you a score which places you at one of four levels. People at level one, describe having little knowledge and confidence to manage their condition on a day to day basis and often feel overwhelmed. People at level four have the most knowledge, skills and confidence. Knowing how you feel about managing your health condition, helps health and care professionals to personalise your services which can make a huge difference to you.

2. Health Coaching

Health coaching is a one to one conversation with a health coach. Health coaches are trained professionals who are there to inspire, guide and motivate you to make positive health choices.

The health coach will listen to you and help you address your health issues by helping you identify, and then work towards, some health goals. It’s important to remember, that these should be your health goals and should reflect any behaviour or lifestyle changes you have decided to make. 

3. Self-Management Education

Self-management education can be any form of education or training for people with long-term conditions. It’s another way to help you develop more knowledge, skills and confidence to manage your health condition more effectively. 

4. Peer Support

There are different types of peer support, but they all bring people together with shared experiences to support each other. The aim is to provide a space where you feel accepted and understood and where everyone’s experiences are equally important. 

What is personalised care and support planning?

Personalised care and support planning (sometimes called PCSP) involves a series of conversations about the health care and support you need to live well if you have a long-term physical or mental health condition.

What benefits can you see to having a good personalised care and support plan? I want to stay in control of as much of my life as possible, but I can't do that unless I know all that is available to me. Having a good, detailed plan will help me stay aware of what I need to do to help myself become better.

Article: What is a Personal Health Budget?

‘A personal health budget is an amount of money to support a person’s identified health and wellbeing needs, planned and agreed between the person and their local NHS team.’

A personal health budget can be managed in three ways, or a combination of them:

1. Notional budget. The money stays with the NHS. Y

2. Budget held by a ’third party’. 

3. Direct payment for healthcare. 

Video: A personal health budget in practice.

Video: What is good personalized care?

Personalized Care Group - NHS Education - Week 3

 *Personalised Care

**How has this model been developed nationally and why are there local variations?

**What is shared decision making?

‘Shared decision making is when health professionals and patients work together. This puts people at the centre of decisions about their treatment and care.’

During shared decision making, it’s important that:

Care and treatment options are fully explored, along with their risks and benefits.

Different choices available to the patient are discussed.

A decision is reached together with a health or social care professional.

Shared decision making is relevant in any non-life-threatening situation where you need to make a decision about your health. 

Can you think of a time when you’ve had a good shared decision-making conversation. What made it different?

It helps me to have a better idea of what rights I have as a patient and how I have an equal right to quality care just like everyone else even though I am a neurodivergent individual.

Video: Shared decision making in practice.

Article: Social perscribing

This is what the appointments in December are all about...that's what will open up for me.

A social prescribing link worker will work with you to consider your wider wellbeing needs. They will give you time to focus on ‘what matters to you’ and take a whole person approach to your health and wellbeing. This can include shared decision making and/or personalised care and support planning (find out more about this in week 4). The link worker then links you into community groups and other services for any practical and emotional support, where it exists in your local area.

Video: What is Social Perscribing?

Example: I am going to be visiting a treatment/diagnostic center next month for my condition and from there, I will be set up with different resources to help me manage my illness better.

Video: Your Legal Right To Choose.

There are six areas where you have a legal right to choose:

Which GP and GP Practice you register with for your care

Where to go for your first outpatient appointment, for both physical and mental health

The right to ask to change your provider (usually a hospital) if you have to wait longer than the national waiting time standards (18 weeks, or 2 weeks to see a Specialist for cancer)

Who carries out your specialist tests when you are referred by your GP

To have a personal health budget if you are eligible

Choice to access treatment in another country.

Thoughts about my rights as a patient: I was surprised to learn that I had so many rights as a patient. I simply thought I had to accept what was and that I didn't have the right to express preferences about who I was treated by or how I was treated. It was not until I got diagnosed with a chronic illness that I came to learn the importance of speaking up for myself and being my own advocate so that I could learn what would work best for me in terms of doctors and treatment. Once I was aware of my rights as a patient, I was able to find my voice and use it to become more aware of my illness, ask the right questions, and have a hand in determining what type of care would be the best for me.

Have you been given a choice?

Here are some useful questions you can use to check that you have been given a choice. It’s worth bearing in mind that not every choice would be appropriate so a bit of common-sense is needed!

Have I discussed the ‘pros’ and ‘con’s’ of different treatment options with my GP/health care professional including whether to have the treatment or not?

Was I offered a choice of where to go for my care or tests?

Did I have the opportunity to choose a suitable alternative hospital? This question applies if the time you would need to wait exceeds your ‘legal right’ to an appointment.

Was information made available to help me make my decisions? If I was given information, was it accessible to me? For example, did it use words I could easily understand?

Was I given sufficient time to consider what was right for me?

Quiz

What experience have you had (if any) of social prescribing, shared decision making or your ‘legal rights to choose’?

I'm actually going through the whole process of shared decision making right now in that I will be going to a diagnostic and treatment centre in a couple of weeks for further examination after being referred there by a specialist.

Monthly update! - November 30, 2020

I was early to the appointment today and got in rather quickly because it wasn't overly busy. The doctor also decided to wait on future shots to see what the pain clinic found. I also got a hold of a copy of my medical records from the office and learned the extent of the endometriosis. I hope they find something at the pain clinic in a couple weeks even if it isn't good. I want to start feeling better.