Common Concerns For Relatives
Stigma and identity
There has been a good deal of progress made towards reducing stigma attached to mental health problems in our society, with initiatives such as the “Time to Change” campaign. However, experiences of stigma can still make it difficult for people with these kinds of problems and their relatives to talk openly about their experiences. What to tell people is a common concern.
This is a very individual choice and depends a lot on the broader situation. It’s a complex issue and one that you may also struggle with as a relative / close friend. Some people are happy to identify themselves as having (or have had) a mental health problem and can talk openly about these experiences. Others share with some carefully chosen close friends or employers, and others choose not to share. It is better to find ways that you and your relative / friend can talk about it in a way you both feel comfortable with. There are no right or wrong answers, and it is up to you to decide how, what and with whom to share.
Recognising the complexity and opening up the opportunity to discuss it may be helpful.
Moving on from mental health services.
The period of moving on from mental health services for friends and relatives can be difficult as they may have come to depend on this support and the prospect of this changing can lead to a sense of real anxiety. It can be helpful to discuss with the clinical team in advance how and when this process will happen. If you are concerned about the timing of this, then it’s important to raise your concerns with the team. It’s also important to find out how you can get back in touch with the services in the future if the need arises. So, for example, can you contact them directly or is a new referral required?
Don’t be afraid to speak up and articulate any concerns you have, it is important that your needs are met as well as the needs of the person being discharged from services. It is not your role to step into a health professional’s shoes so do try to be clear with them about what you think you can and cannot do to support your relative. Reduced input from services should ideally occur gradually and at the same time that links with other support networks are being built; where possible you should be part of the discharge discussion. This might include helping your relative consider other mental health services such as voluntary sector groups, or networks formed through hobbies, and friendship groups. The timing and pace of this transition is important.
Many people realise that their relative may no longer require healthcare support but do not realise that they may be entitled to some assistance with their daily social care needs. This can be provided through your Local Authority Social Services team undertaking a clear assessment of need (Care Act Compliant) which can unlock resources to provide support for personal assistance with such things as cleaning, shopping and cooking. Getting this in place can be much easier whilst your relative is still within the mental healthcare system and can be part of the discussions about reducing their contact with services.
Worrying about the future for our loved ones can be a huge burden, so putting things in place to alleviate some of this anxiety can be of real benefit. It is difficult for anyone to tell you what is likely to happen in the future. This can be very frustrating and can make answers about the future seem vague. The good news is that the future can be as good for someone who has experienced psychosis as for someone who has not.
A common question is whether the clinical symptoms will always be there. Some people recover completely after one episode of psychosis or mania and never experience symptoms again. Other people may have future “episodes” in which their symptoms return, but in between they are symptom free and able to lead a full and satisfying life. A minority of people do continue to experience symptoms, which do not go away. Even within this group, however, may people manage their illness well and lead fulfilling lives. Remember, having a mental health problem does not prevent people from having fulfilling relationships, getting married, having kids, progressing in chosen careers or spending time doing hobbies they enjoy.Spending time with other relatives who are in similar positions of support can be really beneficial and help provide practical tips on how to manage approaches to the future.