A mothers lessons learned when seeking mental health support

Case Study of a Mother, Jane, and Daughter, Ashley, and how Lamp helped them during years of difficulty finding support

*Jane and Ashley are pseudonyms.

Ashley desperately needed help to manage Post-Traumatic Stress Disorder (PTSD) and Emotionally Unstable Personality Disorder (EUPD).

By late 2020, feeling worn out and not knowing which way to turn, Jane was unsure if she could continue. Despite having contacted various agencies, none of them were able to help and at this point, she was soldiering on alone. She then browsed the Internet and while looking for some answers, she came across Lamp.

“Lamp saved me – and I do mean me,” said Jane. “Although it was Ashley who needed support for her mental health, she was unable to seek treatment for herself because her breakdown had left her totally incapable dealing with life, she was totally dependent on me to fight for her.

“I know the statement ‘saved me’ sounds dramatic, but that is exactly what Kay did. (Kay is a Community Advocate with Lamp). Our first conversation lasted over an hour where I revealed everything that had occurred and I cried and cried. Kay listened, but for the first time I felt like somebody really listened. When I put the phone down I felt better, I felt less burdened and I just knew I had found hope and support.

“Over the next few months Kay helped me understand the way that the NHS worked within mental health, and the services they provide (or not) for patients with mental health problems. She was there to advise what action to take when my daughter was prescribed anti-psychotic drugs without ever seeing a doctor. She was there to explain the difference in roles between a psychologist and a psychiatrist. She was there to listen to every brick wall I hit and together we would look for ways over the brick walls.

“She also got to know Ashley, who held a pessimistic view of the reliability of others – she had been let down by professionals time and time again. Kay knew this and she never let Ashley down. This meant the world to Ashley.

“From the moment Lamp got involved, it strengthened my resolve to carry on. The charity provides a vital service, not only for the people suffering with mental health, but to the families supporting them.”

“What I have learnt is that the services that are intended to treat people who require mental health care, are severely underfunded. Depending on where you live, psychologists and psychiatrists are a scarce resource, which could mean lengthy waiting times before being seen delaying diagnoses and vital medication and treatment.

“There is a lack of structure and communication between departments, which can lead to errors and delays. Continuity of treatment is also a massive problem; when patients are struggling with mental health continuity of treatment promotes trust and delivers much better results, helping build good relationships between patient and care givers. When departments have staffing problems this can result in instances where patients can go unnoticed and end up being lost in the system.

“There is no clear-cut way to make a complaint and when a complaint is made, it can take years to get to the stage where you receive a response letter to enable you to request a meeting to resolve issues. This is generally due to lack of communication between the Complaints Organisation and the facility you have lodged a complaint against.”

Jane went on to say: “These are just some of the obstacles patients can face. When it comes to mental health, patients are generally not in a position to fight for themselves. Unless they have a person who can spend hours/weeks/months or, in our case, even years fighting to get the correct diagnoses and treatment, they could easily fall by the way side resulting in them living on the streets or in prison, resorting to drugs and alcohol, or  at worst dead.

“Lamp is vital for these patients. For those who are lucky enough to find the charity and are able to draw on its expertise and support, this could make a difference to them succeeding or giving up and going under.

“Kay has been our rock. I recall the times I called her without an appointment and she just listened to me cry. Her expertise in the way things work is invaluable, but most of all what struck me most is that she really cares. She was invested in Ashley. Kay is strong, reliable and a great listener, and I can’t thank her enough.”

At present, Jane has secured funding for Ashley to attend Rutland House Counselling and Therapy. Following her initial assessment, Ashley will undergo a 36-week programme of DBT treatment which will consist of one-to-one sessions on a weekly basis, and one group therapy session per week.

“More importantly, after a meeting with the staff at the Centre where Ashley was for treatment, we were able to resolve all of the concerns I had regarding my daughter’s treatment. Lessons were learnt and recommendations were tabled to be looked at for future procedures to be improved. From this meeting, things moved very quickly, all the paperwork to enable my daughter to attend the facility that could offer her the much needed treatment was signed off, and an offer to place Ashley on its peers training course in February was just the icing on the cake. Upon completing and passing the course, she will go on to work at the Centre, to help new patients understand what is happening and supporting them through their journey.”

This took three years to achieve.

Kay also played a key role in helping Ashley to secure an overhaul of her flat by her housing association. Jane said: “Ashley now has a beautifully decorated flat fitted with a new kitchen, new windows and a new bathroom. For the first time in over three years, I can now smile when I see her. She is full of hope and excited for her future and she is ready to work hard on healing her mind and learning to manage her personality disorder to enable her to fulfil her potential.”

For others who may find themselves in a similar position, Jane offered this advice: “Ensure you get an assessment and diagnoses from fully qualified psychiatrists. Research the various treatment options which are best suited to your particular diagnoses, then push hard for the required service. If the NHS does not provide the required service due to a lack of funds or doctors, then apply to the Clinical Commissioning Group to fund it in the private sector.

“Don’t be afraid to challenge decisions. While medication can be dished out as a cheaper alternative to treatment, it is not acceptable. Ask probing questions about waiting times, specifically how long you can expect to wait before being seen by a psychiatrist for diagnoses and medication, ask for regular sessions with a psychotherapist (if applicable to your needs). You have the right to challenge how long you have to wait if you feel this will have a detrimental effect on said person’s health.

“Ensure that you are part of the care plan decisions. While supporting services may be on the care plan, that does not mean you will receive the required support since this will depend on waiting times. Ask for regular appointments to be booked in advance not ad hoc. If regular appointments are not available, then challenge this.”

Jane added: “Look at the obstacles you are struggling with and find help in your local area through organisations like Lamp. Take the time to understand who does what – from Community Psychiatric Nurses (CPN), psychiatrists, psychotherapists, counsellors, support workers, occupational health/mental health practitioners, and so forth.

“Never give up, do what it takes to be heard. Research who is at the top of the chain. If you feel your concerns are not being dealt with, then write to them. Keep meticulous records of calls, emails and letters. A diary of events is useful since it can take years for your complaints and concerns to be discussed in meetings. Persistence is key.”

Jane summed up and said: “I strongly believe that every individual is entitled to be given every chance to live their lives, fulfil their dreams and be happy. Thank you Lamp and thank you Kay for being part of our journey and our success.”