This post is my personal account of having a long term health condition, which was in the process of being diagnosed during my application to the Scientist Training Program (STP). Lots of the information in it will be relevant to many long term health conditions and disabilities, but it is not intended to cover all aspects of either. I do not consider my condition to be a disability, but others who have it do.
It also includes information on what the National School of Healthcare Scientists (NSHCS), your Trust, and you can do to support yourself if you have a long term health condition and are or are considering becoming a trainee on the STP.
I am really keen to empower people to take as much of an active role in their own health care as they can. What I hope is that this post will be reassuring, supportive and informative for those with long term health conditions and to those who want a bit more information. Everyone’s experience is unique.
In September 2019 I was diagnosed with a condition called endometriosis, which you can read about here. My symptoms started to get worse, meaning I needed to take days off work (even once missing an exam) after I’d been accepted on to the STP but whilst I was in the pre-employment checks stage for my Trust.
Ways my condition affects my training:
- Symptoms of my disease (mainly pain & fatigue)
- Side effects of treatment (insomnia, brain fog, depression)
- Time off work: either planned (surgery, GP & hospital appointments) or unplanned
- Encountering patients with my condition during my work
What the NSHCS can do to support you
All STPs journeys start with the NSHCS. They create, maintain and run the STP and they will be your first interaction with a body who can help and support you. The information below was correct at the time of writing (August 2021), and most of it is taken from this webpage. This is by no means an exhaustive list and if you want more information on how the NSHCS can support people with long term health conditions, you can email them confidentially on firstname.lastname@example.org
Reasonable adjustments (for applications)
You can ask the NSHCS for additional time when completing the situational judgement tests as part of your application. This will require evidence and should be sent at least three working days before the test deadline.
Special circumstances policy (regarding geographical locations)
The NSHCS has a special circumstances policy, which people can be considered for if they meet either of the following requirements:
- You are the primary carer for someone who is disabled, as defined by the Equality Act 2010.
- You have a medical condition or disability, and follow up for the condition in the specified location is an absolute requirement.
When you make your application to the STP, you can complete the special circumstances request form and will be asked to provide supporting evidence.
Reasonable adjustments (for training plans)
If your long term condition will mean you’ll need to have reasonable adjustments made to your training, you should inform the school when you apply, when you’ve enrolled or as soon as possible after these two have occurred. You should work with your training officer, HR and the occupational health department at your trust, through your employment checks and upon commencement to determine what reasonable adjustments are needed and what can be put in place locally. If this has an impact on your training plan, your ability to progress or complete the programme you should contact the NSHCS who will provide advice and support.
Supporting yourself at work
What is an Occupational Health Department?
Before any member of staff is employed with an NHS hospital, they have to pass an Occupational Health (OH) check. This is completed during your pre-employment checks and is usually a form you fill out, which is then reviewed by the OH dept at your employing hospital’s OH department. Trainees on the STP are no different. This is not a test to see who they want to keep out, but your employer trying to understand any changes they might need to make to your workplace or to your role and to make them aware of any additional support you might need. See this form as an opportunity to get support.
Make sure OH are kept up to date about your condition and use them for support with or without your team
As I’d not met my team by the time I had my OH screening, it was important to me that I tell them about my symptoms, even though I didn’t have a diagnosis at that time. This made sure that if my team wasn’t supportive, I could go to OH and have already built part of a relationship with them, so they could help provide me with the support I needed. You don’t have to disclose anything to your OH department but their role is to take care of all of the hospital’s staff, so we can give the best care to our patients and they will be useful to have on board from the beginning.
Be open with your team about the support you need
I’ve worked for the NHS on and off for a decade, many of my family members work in health care and I worked as a healthcare assistant for many years, nothing much embarrasses me about bodies or what goes on with them. Even with that in mind, I felt more comfortable talking to a senior female member of my team first about my condition, before I went to my line manager/training officer. This isn’t a choice everyone will have but it might help to tell someone who you feel more comfortable with first, and work your confidence up to the person you need to be telling (your training officer and line manager).
Always remember the staff in your team work for an organisation whose main role is to care for people and it attracts in most cases, really caring people.
Keep people in the loop and have a plan
I am very lucky that my team is incredibly supportive of my condition and allows me to manage my workload around the additional needs it throws my way but I also put a lot of effort into planning and keeping my managers informed as best I can.
Are there tasks you know are easier for you to do on days where symptoms might affect you more? Can you wiggle your workload to be lighter on days when you’re not as well and front load ones where you’re feeling better? These decisions should always be made in tandem with your manager but life and work is a balance.
I waited for my most recent surgery for a long time (due to covid) but kept my training officer and my line manager in the loop as much as I could. When the time came, I knew (roughly) how long I was going to need off from talking to my medical team, as well as asking in my support group. I knew if my work wanted a sick note from me and when, what the policy was for taking more time off and had a plan to have a phased return to work when I did go back. In the weeks beforehand, I planned as much as I could to get time dependent tasks done before my surgery and left a handover for things I hadn’t finished.
When I need time off during the working day for appointments, I build up hours during the week beforehand and then use those to cover the time I’m off.
Sometimes, you’ll need emergency time off. If you can, be honest and manage your team’s expectations of how long you’ll be off for (if you can) and let them know if there’s any changes that can be made to support you returning to work. If they aren’t willing to make those arrangements, look to getting your OH team involved and get support from the NSHCS.
What should I do if my team isn’t supportive?
Sometimes your team might not be accommodating or it might be more challenging to manage a long term condition in your specialism. Your training officer/line manager should always be your first port of call, but if you don’t feel comfortable speaking to them you can involve your OH department. Contacting the NSHCS in this case is a must. The sooner they are made aware of problems you’re having at work, the sooner they can help and support you.
What to do if you are diagnosed with a long term health condition during your training
First, talk to your training officer (who will work in your department and support you and your training day to day). They should be in the best place to enact changes locally to enable you to continue your training. They or you might need to get your hospital’s OH team involved.
If you’re diagnosed with a long term health condition and there is impact on your ability to complete the programme or you may be disadvantaged as a result of their long term condition in relation to completing exams or the e-portfolio then you should notify NSHCS
If you’ll need things like extra time during exams or for assignments from university, you should contact your academic supervisor who you will be allocated during your starting month on the STP. They can advise you on the relevant processes and policies for the University. The NSHCS will also have policies to support reasonable adjustments for exams they deliver and can be contacted for further advice.
The School will shortly be publishing some guidance on supporting trainees who have a disability and are undertaking work with Health Education England in relation to supporting learners with Neurodiverse conditions.
Ways you can help yourself
Join a patient support group
Support groups have been incredibly helpful for me and my family before and after my diagnosis. You can find support in so many places, Facebook, Reddit, Instagram or even as part of charities. My specialist trust where I get treatment also has a WhatsApp group and regular support groups. I’ve even recently joined a local singing support group. If these networks don’t exist in your area or in your treating Trust, reach out to disease relevant charities, talk to your medical team or talk to other patient led support groups about setting up your own. Lots of things have moved online recently, which makes them far easy to access from wherever you are.
Support groups means there’s a place I can go to to ask questions from others who might have experienced what I’m going through. Before Covid, that meant seeing others face to face but now means sitting on a zoom call! I contact my medical team less and I suffer less. Even if I don’t want a solution, just sharing a problem and hearing some responses of ‘yeah, I’ve been there too’ can be so validating and a weight off your shoulders.
These support groups and forums have also meant I’ve been able to take part in research for my disease. This is so important to me, as it will benefit others in the future. These tend to be during the working day however, so I always chat about it with my training officer first and we figure out how I will adjust my workload so I can attend.
Find charities who support your disease
Charities can be a brilliant support for you as well. Some organize patient support groups, have patient conferences, free talks from specialists and they can also help you get involved in research in your disease area as well.
Choose the best specialist hospital for your care
The NHS Constitution (which you should be clued up on from your interview for the STP!) means you can pick which GP you go to (as long as you live in their catchment area) and you can choose any organisation to provide you with specialist care, when you’re first referred by your GP. You can read more about it here.
Ensure you have a GP locally
Your family GP might be one you’ve gone to since you were born and there’s a comfort in seeing the same people in your healthcare journey. For me though, there’s nothing worse than needing non-emergency but urgent care and having to go to the walk-in centre at my local A&E. If you move as part of the STP, I’d highly recommend getting a local GP. In my eyes, you should be picky about which GP surgery you choose. I normally go to this NHS site to find a new GP and look at any reviews people have left (being mindful that people with negative views are more likely to leave them!). I also then go check the GP surgery on the Care Quality Commission (CQC) website. The CQC periodically audits healthcare organisations and you can check a GP surgery’s latest report to see how they measure up to CQC’s rigorous standards.
Be kind to yourself
I still struggle with accepting my diagnosis of a chronic health condition which has no cure and unfortunately like most gynaecological problems is continuously overlooked by pharmaceutical companies, the NHS and researchers. Most of the time, I pretend nothing is wrong, even though I feel the effects of my disease and the treatments I need to take everyday. For me, lots of my symptoms of my disease or the side effects of my treatment are similar to just being worn out (fatigue, memory fog, insomnia and anxiety) so I find it really tough to give myself a break sometimes. I have a partner who is very supportive and also very happy to order me to rest, if I’m obviously struggling. My advice would be that if you need time off regardless of if you have a long term condition or not, then you need time off. Be kind to yourself, you will be better at your job if you are doing it whilst you are well.
Empower yourself with knowledge
The best gift I try to give myself is accepting my diagnosis and using knowledge to empower myself to make the best decisions for me about my health and my disease. The internet can be a scary place, use your scientific literature searching skills to find well conducted clinical trials, check if your sources are peer reviewed and see if there’s any systematic reviews for treatments for your condition on Cochrane. Then use this information when you go to your GP or access specialist treatment. So many people with long term conditions don’t know how to do these sorts of things – use your scientific knowledge to your advantage, take your ideas to your medical team, and use this to support others with your condition.
My final piece of advice would be if you need help, ask for it. As STPs we have a wealth of support around us and everyone is as keen for you to finish your training as you are.