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Support possibilities

What is an Adverse Event (AE)

Any untoward medical occurrence in a patient or clinical trial subject administered a medicinal product and which does not necessarily have a causal relationship with this treatment [Dir 2001/20/EC Art 2(m)].

An adverse event can therefore be any unfavourable and unintended sign (e.g. an abnormal laboratory finding), symptom, or disease temporarily associated with the use of a medicinal product, whether or not considered related to the medicinal product (Annex 4 Guideline on good pharmacovigilance practices (GVP) Rev 4).

Reporting Side Effects

If you get any side effects, talk to your Doctor, Pharmacist or Nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at www.mhra.gov.uk/yellowcard.

By reporting side effects, you can help provide more information on the safety of this medicine.

Report an Adverse Event

Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard. Adverse events should also be reported to Fresenius Medical Care on 01623 445 215 and via medinfo-uk(at)fmc-ag.com.

Medical Information

Call 01623 445 100 (please choose option 5). Opening times are Monday-Friday 9am-5pm.

UK/HEMA/FME/0922/0002 – Date of Preparation September 2022.

How can I support my loved one?

In addition to emotional support, there are many ways to support your loved ones in everyday life. We listed some options for you. However, remember that there is no perfect way to support. Try to find a healthy balance for yourself and your loved ones that allowsfor all of you to live as fulfilling of a life as possible. Also, pay attention to your yourself and your needs.

Self-help groups

Here, you can openly exchange information about your situation with other patients or simply talk to people who are experiencing similar things as you. The emotional cohesion that comes from such groups can be invaluable.

Emergency numbers

Make sure that all relevant people have access to emergency numbers and know what to do in case of an emergency. This creates safety for all of the people involved if something should happen.

Learning together

Offer to be involved in the learning process about dialysis as much as you can. The more you know, the better you can support and understand their situation.

Appointments

It can be helpful to accompany the patient to important medical consultations, especially if your relative’s/friend’s mental capacity is impaired. In particular, the decision to undergo a suitable form of therapy should ideally be supported by the patient’s family and friends.

Medication plan

Make sure that your relative/friend adheres to their medication plan that was set up by the attending physician. Medication therapy is designed to relieve symptoms of kidney disease and to preserve any residual kidney function for as long as possible. Failure to follow the medication regimen can lead to serious complications.

Diet

Encourage your relative/friend to follow dietary guidelines given by their healthcare team, as this can have a significant impact on the success of the treatment. You may enjoy trying out new recipes together.

Hygiene

Especially when choosing a home therapy method, it is very important to carry out the treatment steps in a sterile way and to observe hygiene measures. For your loved one, it is important to take care of the catheter exit site or the shunt to avoid infections and complications.

Being a partner during dialysis

For some patients, a trained partner is needed to carry out the treatment. If the decision is made for home therapy, you can be trained in the use of the necessary materials as well as the correct implementation of the treatment. You can learn together and support each other. In an emergency, it can also be helpful to have another person who is familiar with the details of the treatment.

Suddenly finding yourself in the role of the caring partner in dialysis can be scary. You may wonder if you can obtain the necessary knowledge to help your loved one. You may also wonder if you can take on this role in the long run.

Open communication is essential! Remember that you are not only assisting with the treatment, but also maintaining a relationship alongside dialysis. For your long-term mental health, it is important to know your own stress limits and to communicate what they are. You will only have the strength to help if you take good care of yourself. If your assistance is based solely on a sense of obligation to your relative and you ignore your own needs, you risk burning out and becoming overwhelmed. Likewise, you may develop an unconscious aversion to the treatment, which could be perceived by you as a strong obligation and burden.

Try to see  your relative and yourself as a team. Together, you can tackle the treatment and live the longest and fullest life possible.

Your loved one and you should carefully consider how you will support your loved one during treatment.

Talk openly with your relative/friend about how you both can imagine possible assistance with dialysis. If you find that you cannot assist with treatment in the long term, there are still other ways to support.

Where can I seek help?

Dealing with chronic kidney disease is a challenge not only for the person affected. It is understandable that you are concerned about the well-being of your family member or friend and want to support them as well as possible.

However, it is also understandable if you feel overwhelmed by the situation, especially in the beginning stages. It is important to take small steps for everyone involved during these early stages; for example, your loved one can focus on one physician's appointment at a time or keep a patient diary.

You will notice that over time, a new daily routine will establish itself and all of you will find it easier to deal with the disease and related necessary changes. Nevertheless, take good care of yourself. Your physical and mental health are equally important. If you feel that you cannot cope with emotions such as pressure, responsibility, worries and fears (any longer), seek advice!

You can find support from many people,from your loved one’s healthcare team, to your own family and circle of friends, to professional carers and organisations that specialise in working with people who have kidney disease.

Nursing services may be able to assist with your relative’s/friend’s care in different ways. From paramedic services to complete dialysis treatment in the home environment (assisted peritoneal dialysis), a wide range of support options may be found in your area to support you.
Social workers can help in many areas, especially when it comes to benefits, financial support and existing entitlements.

Seeking therapeutic help does not mean failure, nor is it a reason to be ashamed. Confronting a chronic disease poses challenges to the soul that may require a professional approach to overcome.

Always be aware: neither you nor your loved one need to walk this path alone!