Our Advocacy Officer answers your most frequently asked questions

Our advocacy team can help you in many ways. Here, Sophie our Advocacy Officer has answered some of the most frequently asked questions by patients.

I’m not happy with the way my consultant is treating me. Can you do anything to help?

Occasionally, some patients may feel as though their consultant is not treating them appropriately. Perhaps they are being dismissive towards you, or you feel that they are not hearing you or considering your feelings when talking to you. Maybe you feel that they aren’t answering all of your questions, or letting you know the full picture about your diagnosis. This can be quite upsetting and frustrating, and could lead to you wanting to change consultants all together. Leukaemia Care can support you when you feel this way. 

In the first instance, we would explore the issues that you are facing with your consultant in more depth so we can understand the situation in detail and how it has made you feel. If appropriate, we may suggest that you approach your consultant and let them know how you are feeling. Raising your concerns verbally in an open and honest way may help to address the issue you are facing and could prevent tensions in the future. You may want to mention the issue during your next appointment to see if you can solve the issue with them there. Alternatively, you may be able to leave a message with their secretary to pass your concerns on before your next appointment. If you don’t have their contact details, we would be happy to help you find them. 

We understand that this direct approach isn’t always possible – you may feel too uncomfortable to approach your consultant, or it may be difficult to get an appointment with them in the near future. You may even want to bypass this step altogether. In this case, we can support you with raising your concerns to PALS at your hospital. PALS are able to liaise with patients and healthcare professionals when something hasn’t gone right during your care and when relationships are being strained. They can help to solve issues informally, as well as through a formal complaint. We can help you to contact PALS with your concerns if you feel you would like support with this.

If you feel as though the consultant is not hearing you, we can help you to find someone to attend your appointments with you to act as an advocate for you. This may be a family member or a friend, or even your clinical nurse specialist (CNS), if you have one. If these options are not available or applicable to you, we can help you to find an independent advocate to attend your appointment with you. If your advocate feels that they don’t know enough about your condition to attend your appointment with you, we can brief them beforehand and tell them what you would like their support with during your consultation, such as asking questions or taking notes.

If you raise your concerns and your experience with your consultant does not improve, we can help you to explore your options to potentially change your consultant or even to raise a formal complaint.

If you need support to express that you are unhappy with your care, please contact Sophie at advocacy@leukaemiacare.org.uk for more information.

I think I want to get a second opinion about my diagnosis and treatment. How do I go about doing this?

Everyone is entitled to request a second opinion regarding their care. There may be many reasons for this, including wanting to explore different treatment options, seeking the opinion of a specialist, or just wanting to change your consultant all together. Leukaemia Care can support you to identify and explore your options to help you decide what would be best for you and your care.

If you want to explore your treatment options, you may wish to speak to someone who has specialist expertise in treating your condition. If you have a particular specialist in mind that you would be interested in getting a second opinion from, we can help you to contact them by finding their details and more information about their specialty. If you don’t know who the specialists are or how to find them, we can do the research for you to help you to identify them, or to highlight any centres of excellence for your condition. There may be more specialists in some areas than others, but we will do our best to find someone who may be able to help. Whilst we are not able to recommend any specialists specifically, we can send you a selection of potentially useful contacts and locations so you can decide who you would like to reach out to.

In some cases, you may decide that you want to change your consultant altogether. If you decide that you would like your care to be transferred to a specialist, you can enquire with them to see if they have the capacity to take you on as a patient. You can do this by getting in touch with their secretary to explain your situation. If they do have the capacity to take you on, they should be able to contact your current consultant on your behalf to organise the transfer of your care. If you want to change your current consultant for another reason, you can approach your GP to ask if they can make a referral to another consultant on your behalf. Alternatively, you can ask your current consultant to make a referral for you if you feel comfortable to ask them about this.

For more details on how to get a second opinion or for support to do so, please contact Sophie at advocacy@leukaemiacare.org.uk 

My late partner has passed away and I’m not happy with the way they were cared for before they died. I want to raise a complaint with the place where they were treated but I don’t know where to start. Can you help me?

Unfortunately, there are some occasions where a patient will pass away in particularly poor circumstances, which may lead their family members to wish to make a formal complaint to the place where their loved one was treated. This may be to question why certain things happened, or to find out what actions the organisation will implement to prevent this from happening to others. It can be challenging to write a complaint, especially when there are significant emotions involved with going through something so traumatic. Leukaemia Care is here to support families during this difficult time.

The first thing that we would do would be to have a chat with you and establish your main concerns with your loved ones care. We understand that it may be very difficult to go over these details, but we can take things at whatever pace is comfortable for you. These details will help to form the body of the complaint, and may help you to identify the questions you would like the organisation to answer. We can read over any complaints that you write, and can provide feedback on what you have written if this would be helpful to you. 

You may feel that you cannot write the complaint by yourself. If you feel this way, we can support you by drafting something for you on your behalf. This can be really helpful and can assist you in making sure we have included everything that you would like to be considered in the complaint, as well as helping you to form questions to address each of your concerns. Whilst we can draft the complaint on your behalf, it is important to consider that we aren’t able to write letters of support for the complaint as we were not present at the time of the events that took place. We can assist you to find the complaints procedure for the organisation and the appropriate person or department to submit it to. This may differ between organisations, but we can help you to find this information if you aren’t sure.

When you get a response from your complaint, we would be happy to go through this with you if you would find this helpful. If there is anything that you aren’t happy with in the response, we can support you to raise this in a follow up with the organisation if you would like us to.

Sometimes, a complaint may result in a meeting with the organisation. We will make sure you have all of the support and information you need before attending the meeting. We can help you to formulate questions that you may want to ask, and to propose changes that you would like the organisation to bring into effect. If you feel you need someone to support you when you go to this meeting, we can help to arrange an independent advocate to attend the meeting with you, who can help to ensure you are being heard and that your questions are answered.

If you remain unhappy with the response to your complaint, we can help you to escalate it to the appropriate external body, such as the Parliamentary and Health Service Ombudsman.

It is important to mention that we are not able to provide legal advice or help with any financial compensation matters, as this is beyond the remit of what we can offer. We can however point you in the right direction to find legal advice, should you require assistance with this.

We understand that this may be a long and emotional process for someone to go through when they are grieving. As well as providing practical support with forming your complaint, Leukaemia Care can provide emotional support every step of the way. 

For more information on how we can support you to raise a complaint about care, please contact Sophie at advocacy@leukaemiacare.org.uk 

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